Shining a spotlight on a few of the people that make self-direction so remarkable.
Take a moment and meet just a few of the incredible caregivers and PPL staff, learn about their long-standing expertise in the field of self-direction and how they each take the time to make self-direction better and easier for all.
Participant Spotlight: Andrew
“Through self-direction, I can make decisions that best suit my lifestyle, personal interests and goals.”
“Self-direction has allowed me to be the major decision maker in my own life,” says Andrew M. a 38-year-old college graduate who experiences cerebral palsy. “Through self-direction, I can make decisions that best suit my lifestyle, personal interests and goals.”
Andrew has used self-directed care for the past 17 years, which has enabled him to live an independent, fulfilling life filled with voice lessons, tutoring, yoga classes, serving as a docent for a local historical society, and as an usher during events at the Great Auditorium. He actively leverages his B.A. in Communications and uses many channels to advocate for people with disabilities – and is working toward a goal of moving those service efforts into a career in advocacy.
He shares, “The other care models I used in the past required an agency to make decisions for me. Self-direction fits my life and needs much better." For Andrew, it's the obvious choice and he wants others to know, "It empowers participants to be in control of the type of care and services they receive and to determine how they want to live within their own home and community.”
Participant Spotlight: Jim, Samime & Derya
"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.”
Caregiver Spotlight: Ricky
"Self-direction has the ability to completely change your life – it's been an incredible blessing. I'm so thankful for PPL."
“Finding PPL was an incredible turning point for our family as we’re no longer concerned about our son’s safety,” says Ricky, who works with his wife providing self-directed care for Jason, their 39 year old son with special needs. Prior to learning about self-direction, Jason experienced negligence in attention that put his health at risk. As a response, the family urgently sought other care options; and learned about self-direction with a NJ program that would financially compensate them for serving as a caregiver for their son.
Ricky’s wife began working with PPL as a self-directed caregiver in 2018. Ricky was able to retire early in 2020 and join her in dedicating their time to caring for Jason as part of the program. Self-direction has not only provided Ricky’s family with the financial resources and flexibility to care for their son, but also provided more peace of mind and reduced emotional stress because they can now ensure Jason is cared for properly.
Self-direction also better meets Jason’s personal care needs as he no longer has to suffer through anxiety-filled car rides to receive care and can even choose when he wants to eat each day, which was often a source of emotional stress.
Ricky only wishes his family had discovered self-direction sooner. He shares, “self-direction has the ability to completely change your life – it’s been an incredible blessing. I’m so thankful for PPL. Now I just submit my timecard each week and then, I can devote (the rest of) my time to Jason, instead of worrying about making money elsewhere.”
Caregiver Spotlight: Ashley
"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.”
"I really appreciate Ship. She has become one of my best friends; like the sister I never had. She empowers me every day."
Caregiver Spotlight: Annelise "Ship"
When Ethan B. was looking for a new caregiver, he turned to his contacts on Facebook hoping to find someone he could trust to provide quality home-based care. He was pleasantly surprised when a college friend, Annelise “Ship” Shipley, responded that she was interested in taking on the role.
Ethan shares, “We scheduled a video call and had an incredible conversation; I offered her the opportunity on the spot. I knew right away she was the perfect person for the opportunity.”
Ethan lives with a physical disability and uses a wheelchair. He finds being physically active very challenging, but working with Ship has been a perfect match. He says, “Due to her own personal experiences, Ship understands the challenges people using wheelchairs face with access. She truly empathizes with me about mobility and accessibility challenges.”
While working in the role, Ship leverages her bachelor's degree in health and exercise science and a Master of Science Degree in Applied Exercise. Ship also uses her sports performance, biomechanics, and nutrition experience to brainstorm with Ethan to find new ways to make life more accessible and better incorporate nutrition into his lifestyle.
Self-directed care has been critical for Ethan, who wants to work with a caregiver who matches his personality and live as independently as possible. He adds, “self-direction has provided me with the opportunity to manage my own care – along with the flexibility to recruit and hire caregivers who I know I will get along with.”
Claude, Account Manager
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:
- The paperwork is too hard to figure out
- Managing a budget is too difficult
- 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.
Tracy, Community Liaison
Tracy is focused on building robust educational materials and forming key partnerships within community so that more individuals can learn about the value of self-directed care.
As PPL’s Community Liaison for the state of Indiana, Tracy meets with advocacy organizations in the market with a shared goal to “strengthen our relationship with the community to increase awareness and referrals for self-directed care".
Tracy also is working with partners and stakeholders to help prepare for Indiana’s upcoming transition to Medicaid Managed Long Term Services & Supports (MLTSS) in 2024. Her goal is to prepare referral sources and MCOs on the process changes that will occur with the transition, specifically around the self-directed care option.
Tracy joined PPL in 2013 as a Support Broker. From there, she was promoted to Lead Support Broker, and eventually moved into her current role as Community Liaison in August 2022. Prior to PPL, Tracy served the state of Tennessee for 10 years as a Vocational Rehabilitation Counselor for the deaf. Tracy has a master’s degree in vocational rehabilitation counseling as well as a minor in American Sign Language.
Laurie, Community Liaison
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.