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Laura Bachelder is a nurse and clinical manager at Andwell Health Partners.
What started out as one of the most joyous moments of Bethani’s life quickly turned into a crisis. When her son Sebastian was born at 30 weeks, he was immediately rushed an hour away to MaineHealth Barbara Bush Children’s Hospital with a life-threatening condition. His lungs didn’t fully develop, and his esophagus was connected to his windpipe, preventing him from eating and breathing properly.
During surgery, Sebastian’s lungs collapsed and his heart stopped. It took 19 minutes of CPR and two tubes to reinflate his lungs, but Sebastian is a survivor. Eventually, doctors completed the tracheostomy he needed, and after six months in the hospital, he came home without any lasting neurological damage.
But this wasn’t the end of the story for Sebastian and his family. They needed a dedicated interdisciplinary team to help him recover from the trauma, wean him off his ventilator, and grow into the energetic elementary school student he is today. To do that, Sebastian needed care at home.
With the help of local home-based care providers, Sebastian got the physical, occupational, and speech therapy he needed to support communication, feeding, strength, and motor skill development all at home. By integrating therapy into everyday routines, his care team was able to foster meaningful developmental progress, build independence, prevent secondary complications, and empower his family to confidently manage his complex medical needs.
Today, he is a happy, healthy, and thriving little boy who is free from ventilator support. Thanks to his care team, Sebastian is meeting milestones and enjoying all that life has to offer. When he’s not learning with his friends in school, he likes to color, paint, do puzzles, swim, kayak, and look for cool rocks on hikes with his family.
His journey is a powerful reminder of what can be accomplished when expert care, family devotion, and determination come together. Sebastian’s story illustrates the life-changing impact of coordinated home-based nursing and therapy services. Because he was able to receive specialized care in the comfort and safety of his home, surrounded by the people who loved him most, he was given the opportunity not only to overcome incredible obstacles but to truly flourish. What began as a fragile start has become an inspiring story of resilience, hope, and a bright future filled with possibility.
Stories like Sebastian’s are why maintaining access to Medicaid home- and community-based services (HCBS) is so important. Across the state, over 3,000 children like Sebastian utilize these services, as do thousands of adults and individuals with disabilities. This not only preserves their independence and dignity, but it also helps families avoid costly institutional settings. In fact, according to the National Alliance for Care at Home, every state in the nation spends less on HCBS than on institutional care.
Medicaid home and community-based services are essential to the individuals and families who receive them, and they must be protected by policymakers. While lawmakers look to strengthen these programs and implement program integrity reforms, I urge them to protect the overwhelming majority of agencies like ours that provide quality, compassionate care in the home and who are laser focused on doing what is right for patients like Sebastian.
As Maine’s largest independent non-profit home healthcare organization, we do not tolerate anyone who undermines trust in HCBS. To protect patients and reassure families that they can access safe, quality care close to home, we welcome greater oversight. At the same time, policymakers must crack down on known bad actors without overburdening the state’s legitimate providers.
Finally, policymakers in Augusta and Washington must continue to invest in the vital Medicaid home- and community-based services that families rely on. Because every child and person living with a disability deserves the chance to thrive at home.