Xavier

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At 16 months old, Xavier is into everything that makes noise and moves. He’s also a big fan of books that play nursery rhymes and his mother’s home cooking! His mother Davida has become quite the chef, watching YouTube videos to make new food for Xavier and her family.

Xavier’s doctors describe him as a miracle baby, having survived a traumatic brain injury at birth that took four months to uncover. While the first 16 months of Xavier’s life have not been easy, with doctor’s visits almost every day to address his complex medical needs (i.e., seizure disorder, GERD, torticollis, plagiocephaly, eczema, and food allergies), his mom says she gets through it with prayer. “Prayer has been a resounding force my strength. At 2:00 a.m. when your son has a seizure, prayer gets you through it. I also journal a lot and contribute to motivation groups for moms,” said Davida.

Davida says caring for Xavier is very busy, with numerous therapies for his development (physical, occupational and speech) and specialty visits for tests and exams. As a mother of two children and with Xavier’s father in the military, Davida has had to learn how to be effective with time management. One of the biggest challenge Xavier’s family faces is fitting in all of Xavier’s medical appointments on top of caring for their 10-year-old daughter, Amber who is active in school choir and other activities. “We schedule our life and our days around Xavier’s healthcare. It’s difficult, but having a routine is key,” says Davida.

When you have a child with complex medical needs, you want the very best care for your child. Sometimes this means having to travel to specialists outside of your local community, including out of state. Xavier’s family has had to travel numerous times to Children’s National Hospital in D.C. and Children’s Hospital of Philadelphia (CHOP) to see a multitude of specialists. “It isn’t always easy, but I’m willing to travel longer distances to get to a preferred provider,” says Davida.

Davida and her family are so grateful they were referred to the Rare and Expensive Case Management (REM) Program when Xavier was eight months old. Prior to enrolling in the REM Program, Xavier’s specialists were in many different insurance networks and states. The cost of care was a burden, with constant out-of-pocket copays. Having enrolled in the REM Program, Xavier and his family now have access to more providers in network and are able to afford the cost of Xavier’s care.

With the REM Program, Xavier and his family have access to a Clinical Care Coordinator. Davida states, her coordinator Mary is very considerate and responsive, “she’s always helping and lifting our load. Mary helps us with a lot with completing paperwork and locating resources for Xavier, including hospital grade items such as a weighted wagon, orthoptic shoes, and a pelvic stabilizing walker to help Xavier learn to walk.” Knowing the needs of the family and with the assistance of The Coordinating Center’s Family Resource Fund, Mary was also able to help his family purchase an Abiie highchair, which will grow with Xavier as he gets older. “Mary is so understanding of our situation and our family’s needs. We are incredibly grateful to her and The Coordinating Center,” said Davida.

Davida’s advice for someone considering services from The Coordinating Center is to pursue it. She says, “you don’t know that you don’t have something until you get it and realize it has a huge significant on your life. At first sight it was frustrating because having to doing paperwork and meeting more people and should I add another thing to the pot. It’s a road map almost like Rosetta stone (like going to another country and not knowing the language) for understanding and learning what you don’t know.”

Meiko

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Eleven-year-old Meiko was born with a rare brain disease that greatly impacted his vision and hearing. Without an official diagnosis it was extremely difficult for Meiko’s family to access affordable health care services; his Medicaid application was denied, leaving him and his family without access to affordable and accessible in-home services and supports Meiko desperately needed. As luck would have it, while at court waiting for the appeal process to begin, Meiko’s mom Tiffany met a Coordinator who worked for The Coordinating Center. After hearing Meiko’s story, it was clear to the Coordinator that Meiko needed to be enrolled in the Model Waiver, a Maryland Medicaid program, which provides critical services and supports to medically fragile individuals, before the age of 22. With the Coordinator’s help, Tiffany connected with The Center and Meiko was approved for and enrolled in the Model Waiver.

In 2016 when Meiko was six-years old, Tiffany received a call from Meiko’s doctor saying that a new rare disease had just been discovered, which met Meiko’s symptoms. The doctor explained that Meiko had a rare neurodevelopmental disorder called White-Sutton Syndrome. This syndrome is mainly characterized by developmental delay, intellectual disability, craniofacial abnormalities and commonly features of autism spectrum disorder. Finally, Meiko and his family had answers. While there is no cure for White-Sutton Syndrome today, there are symptomatic treatments that can vastly improve a person’s quality of life.

Today Meiko is learning to be as independent as possible in his home, and while he is not a huge fan of virtual learning, Tiffany says working remotely has given her the opportunity to watch Meiko grow and develop more closely. “I’m still learning every day, but prior to connecting with The Center it felt like I was on my own trying to figure everything out, but now I have a support system,” stated Tiffany. When Meiko’s family needed help covering some of Meiko’s out-of-pocket medical expenses, The Center’s Family Resource Fund stepped in to assist, covering $400 for his special eye drops and ointments. Tiffany says she is most grateful for Meiko’s coordinator, who goes to bat for her family. Since joining The Center, Meiko’s family no longer worry about Meiko’s health insurance. Tiffany says, “I tell everyone that its hard, but I give them encouragement and always try to share the information I have about The Center.”

Ari

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Becoming a parent of twins is a life changing event. There’s excitement, anticipation, and at the same time fear, as the arrival of multiple newborns can bring medical, logistical, financial, and emotional challenges. Now imagine your newborn in the neonatal intensive care unit. Suddenly you are forced to navigate intensive medical care for your newborn without any support. That is what it was like for Brianna and Fred, her husband, whose son Ari was born with severe kyphosis, scoliosis, and a chronic lung condition. “I was so discouraged when we brought Ari home from the NICU because we were thrust into this situation with very little warning and hardly any support. We also had another preemie at home to care for as well,” said Brianna.

The first three years of Ari’s life, Brianna and Fred faced a lot of challenges with coordinating around the clock care and navigating insurance. In 2019, Ari had a major spinal fusion, which left him unable to walk or stand. Ari requires a wheelchair and has to wear oxygen at night as he has chronic lung disease and requires a g-tube. With no insurance coverage for nursing services, Ari’s dad left his job. The move from a two-earner household to a one-earner household was tough, but necessary as Ari could not be left with someone without a medical background or training and an out of pocket, private duty nurse was not affordable.

Thankfully, Ari’s dad took the time to complete the Maryland Model Waiver application, a daunting task that Brianna was unable to take on as a new mother of twins. Once enrolled into Model Waiver, Ari and his family were linked to a Clinical Care Coordinator at The Coordinating Center who helped Ari’s parents obtain the maximum covered nursing services available under the Model Waiver. Not only was Ari’s mom able to return to work, but Ari got to go to school with nursing services secured by his Coordinator and covered under the Model Waiver.

“Providing care for a person who has long-term skilled care needs is a full-time job with no relief. Our lives revolve around Ari and his care needs. We interact with others sparingly, we rarely engage socially with other people, I have a pantry section of just medical supplies, and we have spent hours upon countless hours dealing with health insurance issues.” Having in-home and in the classroom nursing services is a game changer! Ari, who is now four-year’s old is thriving. “Ari is very bright. He is fascinated by robots, and he loves playing with his twin sister, Sloane, and his older sister, Lennah. Being an extrovert, Ari makes friends easily. Ari is also very particular about his care and knows what he wants, what he doesn’t want, and isn’t shy about telling us,” says Brianna.

Brianna says, “My advice to others considering The Coordinating Center would be to get all of your initial paperwork completed, even if it feels futile or insurmountable. Our coordinator moved several mountains for us to ensure Ari got the help he needed, and we are forever grateful!”

Meaghan

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Meaghan’s friends and family describe her as hilarious, quirky and one of a kind 22-year-old. Meaghan loves animals, her favorites are horses, cats and fish. Twice a week Meaghan enjoys horseback riding, which she has been doing since the age of seven. When she’s not riding, she enjoys cooking, swinging on her swing set and traveling with her family. Once a week, Meaghan attends a social skills group, which helps her and other young adults living with Autism Spectrum Disorder improve their communication and social skills.

At the age of 13, Meaghan began receiving Autism Waiver services after being on Wait List for nine years. Prior to receiving Autism Waiver services, Meaghan’s family struggled to find appropriate services and supports. One of the biggest challenges was finding reliable and willing childcare providers to care for Meaghan’s significant behavioral challenges and medical needs. While the early years were challenging, Meaghan’s mom says it made her more aware and better prepared, more resilient, compassionate and passionate.

Meaghan and her mom are extremely grateful for their Service Coordinator Lauren, who was instrumental in helping Meaghan and her entire family open a lot of doors. Meaghan’s mom states, “Our Coordinator Lauren helped us navigate through the daunting and confusing aspects of processes, forms, timelines. She was always organized, on time, made things very easy for me. She opened up a world of services that I didn’t know existed. She was a sounding board, a voice of reason and the ultimate professional. Lauren has been an integral part of all of Meaghan’s roadblocks and milestones. She truly cares and it shows.”

In just a few weeks Meaghan will officially transition out of the Autism Waiver to DDA services. When researching options for a new service coordinator, Meaghan and her family chose to continue to work with The Coordinating Center because she says, “hands down, it has changed our lives.”

Alian

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At 16-years old most teens are busy getting ready for prom, learning to drive, and playing sports, and Alian was no different. At an early age Alian fell in love with the game of soccer, he continued to play the sport until one day he suddenly fell ill. Alian, who was 16 at the time was rushed to the hospital where he was diagnosed with kidney failure. After receiving a kidney transplant Alain developed diabetes and was referred to The Coordinating Center by his primary care physician for support with managing his new diagnosis. Alian’s new diagnosis came with some harsh realities, including the need for him to stop playing competitive soccer.

Being connected with The Coordinating Center and working with his coordinator has helped Alian in more ways than he could ever imagine. Alian’s coordinator helped him navigate insurance mishaps, access medications, arrange transportation and connected him with a therapist to help him cope with his new lifestyle and sudden changes. When Alian could not afford the medical supplies and equipment he needed to manage his diabetes, his coordinator applied for funding from The Center’s Family Resource Fund to cover the out of pocket expenses.

Despite all of these new realities, Alian was able to find a new passion, which he discovered when he entered an acting competition and won first place. The competition helped Alian discover his hidden talent and gave him something new to look forward to. “It wasn’t until I was in the room with all these producers, agents, and directors that I realized that acting is something I should really pursue.”

The support of The Coordinating Center has helped Alian make great strides. He is not only healthier, but happier. Alian is now able to pursue his acting passion without constantly worrying about the stress of managing his health thanks to The Coordinating Center and the Family Resource Fund.

Bradley

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After years of marriage Bradley’s parents wanted a second child, but decided if it didn’t happen by age 35, they would stop trying, but at 35 years old Melanie found out Bradley was coming. Bradley was diagnosed with Autism as a young child and during a time where Autism wasn’t as well understood as it is now. Bradley’s parents spent countless hours researching the diagnosis because they didn’t just want to understand Autism, they wanted to have the tools they needed to support and provide quality care for their son.

Bradley joined the Autism Waiver and connected with The Coordinating Center at age 12. Since connecting with The Coordinating Center, Bradley has transferred to a school that can support his learning needs and provides him with the resources he needs during the school day. “Bradley has made tremendous progress and I attribute that in part to The Coordinating Center” said, Bradley’s mother Melanie.

Bradley loves playing on his IPad, the outdoors, swimming, and going to his favorite restaurant, Hunan L. Rose. Thanks to the one on one tech service Bradley receives he can go out in the community do all these things every day.

In a week Bradley will be heading to a summer camp program through The League for People with Disabilities that his coordinator found, and his parents will receive respite during that time. “We learn as we go through it…he may not be an engineer, but he’ll be the best Bradley he can be.”

Our Impact: Support from The Coordinating Center has made life easier for The Washington family. With the help of Bradley’s coordinator, Bradley can receive services from techs, that take him into the community 7 days a week and allow him to do all the things he loves while learning life skills.

Hailey

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When Hailey was 2 years old, she took a fall in the bath tub which lead to the discovery of her rare condition called Klippel-Feil syndrome, that would leave her in a wheelchair. The doctors told her family she wouldn’t be able to speak, and they shouldn’t expect much from her physically.

Fast forward to nine years later and Hailey is preparing to head to her first cheerleading practice next week. Although Hailey is in a wheelchair she loves to sing, dance, and play with her dog when she’s not working on her latest arts and crafts project. “You always have to try, if you can’t do it that’s okay, but you have to try” this is the mantra Hailey’s grandmother, Dawn teaches Hailey to live by and she doesn’t disappoint.

Hailey was selected by MWPH as an ambassador to represent children with disabilities in Washington, DC at the Captiol. During her trip Hailey spoke with Senator Chris Van Hollen and shared with him how important it is to keep the funding for her insurance as it is how she is able to afford the care she needs.

Our Impact: Through The Coordinating Center and the REM program, Hailey is able to maintain her insurance and have access to the medical equipment she needs to live comfortably. Hailey’s coordinator makes sure she has the adaptive equipment she needs in school and continues to advocate for her needs.

Arnita

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Arnita’s Story: Arnita is a very social individual who appreciates the power of the written and spoken word; most of her favorite hobbies and passions involve reading and writing. Whether it’s a short story, essay or a sermon at church, Arnita loves the experience of creating and sharing. If she’s not writing or reading, you can find Arnita volunteering, playing Bingo with friends, or enjoying some active time in her community’s fitness center.

At 70-years-old, Arnita has been a client of the WISH Program since 2018. She started working with the program when she was in need of assistance to address her health concerns including diabetes, shingles, high blood pressure, and glaucoma. Arnita’s health was in jeopardy, she was also having a hard time keeping track of her medication schedule and dosage, putting her at risk for a serious medical emergency. She also needed immediate help understanding how to manage her diabetes as she was struggling to monitor her blood sugar, and faced hurdles such as the affordability of her essential diabetic supplies and access to affordable and reliable transportation.

Recognizing Arnita’s needs, WISH Coach Mariam worked hard to secure affordable medication and diabetic supplies, coordinate fresh and healthy food delivery, and arrange for supports including housekeeping assistance and convenient delivery of Arnita’s critical medical and diabetic supplies. Along the way, Mariam has helped Arnita gain a better understanding of not only her diagnoses, but also her medical insurance coverage. This support and knowledge gives Arnita the ability to advocate for and control her own health. Reflecting on the impact of WISH’s support, Arnita says, “I would not have been able to access or take my medication without this program!”

Arnita shares that since she has been a client of the WISH Program, she has begun to feel like she can thrive. “I recommend the WISH Program to all of my friends, and I would do the same for anyone who needs help. WISH Coaches help you thrive; this is a very worthwhile program.”

The WISH Program helps seniors like Arnita remain healthy and independent by providing a Health Coach who can help them develop a health plan and connect to resources in the community. WISH, a program of the Nexus Montgomery Regional Partnership, is supported and endorsed by the six Montgomery County community hospitals. If you or someone you know is over 65, has Medicare and lives in one of the independent living facilities listed here, call 301-628-3470 to make a referral to the WISH Program.

Joyce

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Joyce’s story: Joyce is a 68-year-old local who strongly values her independence and freedom. She loves to try new foods, explore new locations, and meet new people. She says surely, “if you don’t talk, you don’t learn!” If she’s not out-and-about, Joyce can be found at home enjoying the company of her family. When her grandchildren are around, Joyce loves to read, cook, visit museums, and do crafts together. As a retired long-term substitute teacher, Joyce has a passion for education and enriching activities.

Joyce has been a client of the WISH Program since 2018 when she learned about the program through an informational WISH session held in her community. Joyce has defeated cancer twice in her life, but was still in need of help with her oral health, vision, and the complicated effects of lymphedema. Once connected with the WISH Program, Joyce began seeing great health and quality-of-life benefits thanks to help from her WISH Coach, Zarqa. Zarqa helped Joyce secure Medicaid coverage, arranged for the delivery of fresh and healthy foods straight to her door, located resources and services to help with Joyce’s dental and vision concerns, and ensured that critical medical supplies would be easily available when Joyce needed them. Joyce believes that without this critical help, she would not have been able to avoid a worsening health condition. According to Joyce, “Zarqa has also been such a great listener. I appreciate having someone to talk to who knows how to navigate my health needs. Without this help, I don’t know how I could survive.”

Joyce happily shares that since she has been a client of the WISH Program, she “feels more motivated to advocate for her own needs as well as those of others.” On sharing her success with the people around her, Joyce says “I spread the word about WISH because you never know what someone is going through. You don’t know what life is going to bring, and programs like WISH make it all better!”

The WISH Program helps seniors like Joyce remain healthy and independent by providing a Health Coach who can help them develop a health plan and connect to resources in the community. WISH, a program of the Nexus Montgomery Regional Partnership, is supported and endorsed by the six Montgomery County community hospitals. If you or someone you know is over 65, has Medicare and lives in one of the independent living facilities listed here, call 301-628-3470 to make a referral to the WISH Program.

Jacqueline

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Jacqueline is a 28-year old who after experiencing burns over 90% of her body at only 5-years-old, has accomplished just as much as she has overcome. After spending a year and a half in the hospital to manage her condition, Jacqueline was feeling nervous about the amount of adjusting and recovery that was yet ahead of her.

During her initial hospital stay, Jacqueline had parts of her arms and legs amputated and was thus unable to walk the same way she did before. She also had to adjust to her new tracheostomy, and knew that frequent hospital stays were still ahead in her future. She wondered what it would be like going back to school and how she was going to be able to catch up and keep up with her classmates, but with a lot of hard work and planning, she was able to stay on-track. Now an adult, Jacqueline says that her burns still cause issues with things like blood clots, lingering pain, and overall mobility. She says “even normal things like going to the dentist can be difficult.”

Jacqueline has been a client of The Coordinating Center since childhood when she came home from the hospital. Throughout her time with The Center so far, coordinators have helped arrange for Jacqueline’s essential nursing hours, assisted in locating medical providers and supports, and even helped Jacqueline find a way to fix her walker, something essential to her independence, when it needed repairs. “The Coordinating Center is a great resource because they show so much care and they make sure that you have everything that you need. They have helped me make sure that my health is in order.” She adds, “I’ve really been able to develop a personal bond with my coordinator.”

Jacqueline began developing goals from a young age when new experiences at a camp for burn survivors inspired her to reach for more. “I did so many things at camp that I didn’t think I could do! It inspired me to take on new adventures.” Since then, Jacqueline has been fulfilling her passion for communications and journalism and working to identify her purpose. “If I could make a difference for even just one person, I could serve a part of my purpose for why I’m still here and living.”Jacqueline has met and surpassed many goals for herself including earning her bachelors and masters degrees, starting a job, traveling the U.S. and overseas, and maintaining a strong and positive social life. She smiles and says, “I have a great group of friends who like me for who I am.” She has even met health-related goals including having her tracheostomy removed after twenty years! Next, Jacqueline wants to work on becoming even more independent by finding her dream job, becoming a home owner, and starting her own family. “I have to challenge myself to show people that I can do all of the same things that anyone else can do, just in a different way. We all want the same things out of life.”