May 7, 2024
Advocacy is Key for the Longhini Family
A remarkable family we serve benefits from their Care Coordinator’s support, advocacy, and partnership.
Beth and Matthew Longhini never expected to adopt three children with intellectual and developmental disabilities. But when the opportunity arose, they dedicated themselves to creating the best lives possible for siblings who were placed in the foster care system.
“When the children came to us, we didn’t know the degree of medical complexity,” Beth said. “Still, we were excited to be there for them from the beginning. We very quickly fell in love.”
The Longhinis became a host family for emergency foster care in Pittsburgh, PA starting in 2016. Initially, they cared for Jasmine, now age 12, and Angie Marie, now age 10. In 2017, they were also connected to the girls’ brother Braxton, who is currently seven years old. The Longhinis chose to adopt all three children, creating a nurturing environment where the siblings can thrive.
All of the children have rare genetic disorders and experience the effects of fetal alcohol spectrum disorder. Their individual health care needs are vastly different and require a range of medical specialists.
The Longhinis moved to East Bethany, NY to be closer to family, seeking a support network for their children. They found additional support through Care Coordination from Person Centered Services.
Roxanne Monteleone, a Care Coordinator with a passion for advocacy, has partnered with the Longhinis as they navigate a complex and challenging system of care. She has helped the family arrange appointments, complete necessary forms, and find appropriate medical providers.
“I 100% think of Roxanne as part of my support group,” said Beth. “I don’t know what I would do if I didn’t have someone like Roxanne.”
Jasmine and Braxton both experience cortical vision impairment, a brain-based form of blindness. With Roxanne’s help, Jasmine and Braxton were connected to resources through the New York State Commission for the Blind.
Roxanne works with the family’s broker, ensuring their self-directed budgets include everything the family needs. She has also assisted the Longhinis with enrolling their children in summer camp, directed them toward needed legal aid, and provided suggestions during Individualized Education Program (IEP) meetings.
“She bridges any gaps we may have,” said Beth. “Roxanne is always available to lend an ear to vent to, do research, or help me figure out the best path for Jasmine, Angie Marie, and Braxton.”
“We’re there to supplement the family’s advocacy,” said Roxanne. “It can be difficult for parents if they don’t have a Care Coordinator to help them push for what they need.”
“Sometimes if parents don’t push, doctors don’t push,” added Beth, who has been a constant advocate for the health of her children. “It can be difficult for some specialties to see the full picture. Families need to be open about their struggles.”
Though the Longhini siblings endure daily challenges, including sensory processing disorders, sleep problems, and issues related to short-term memory and executive functioning, they lead flourishing lives that many thought impossible.
The children participate in horseback riding, school plays, swimming lessons, ice skating, hockey, and other activities that are sometimes adapted to be more accessible. They attend festivals and live shows, such as Disney on Ice, and always express their love of music. The siblings have dedicated and inspiring parents who are truly committed to seeing them succeed.
“The Longhini family has touched my life,” said Roxanne. “Beth and Matt saved these children. They are some of the strongest advocates I have ever met.”
Beth and Matt have also shared their heartfelt appreciation for their Care Coordinator.
“Roxanne is a very important part of our story,” said Beth. “She encourages me to keep going and helps me find a way over each hurdle we are faced with.”
Person Centered Services is eager to support the Longhini family’s continued journey, partnering with them as they secure the services they need for their children to prosper and reach their potential.
