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

Welcome to our Participant Spotlight Series, where we feature real stories of participants, who are choosing self-direction.

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.”

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