Janelle

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Twelve-year-old Janelle loves to travel with her family and enjoys watching movies, listening to music, going outdoors, and playing with her brothers and sister. Janelle is the oldest of four siblings who grew up in a Navy family. Her father Jeremiah is a Navy Veteran, who met Janelle’s mom, Angela from South Korea, who studied in the USA and was working at the Defense Language Institute Foreign Language Center.

Janelle was born full-term, with all signs pointing to a healthy baby girl; however, at four months old she began missing developmental milestones, such as sitting up. Her parents continued to notice fluctuating changes in her development. She could speak at eight months but could not transition from laying or rolling to sitting, by 15 months her verbal skills started to decline and at 33 months old, Janelle began having seizures.

With Janelle’s decline in development and the complexity of her medical needs, she was diagnosed with Rett Syndrome, a rare genetic neurological disorder that occurs almost exclusively in girls. Rett Syndrome leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. With limited treatment options available in Japan and through the military, Janelle and her family medically transferred to Virginia and then moved to Maryland.

With Janelle’s developmental behaviors, uncontrollable seizures, and constant waking up in the middle of the night crying, her mom had a very difficult time.

“It was challenging with my family in Korea and Jeremiah in the Navy and his family in Minnesota. But I love being a mother to Janelle. She is a blessing and the most patient person ever, very strong and bright, and her presence is amazing. Whenever I tell her I love you she looks at me as if she is saying, ‘mommy I know you do, I love you too’.”

Janelle’s family learned about The Coordinating Center through a Navy social worker who identified the Model Waiver program as a potential resource for their family. Having struggled to find funding for nursing and a nursing agency to provide the hours of coverage needed, Angela says that The Coordinating Center has been a tremendous help to her family. “Sheryl, Janelle’s care coordinator was a big help with coordinating with doctors, agencies, and schools, getting nurse hours covered, and funding for medical bills.”

In trying to raise awareness for Rett Syndrome, Janelle’s parents started an adaptive bike campaign. Their goal was to raise approximately $4,900 to buy an adaptive bike for Janelle, and they surpassed their goal within 24 hours, raising over $5,600. The family had a video produced, to further their advocacy efforts and raise awareness. Janelle’s mom says “Raising awareness for Rett Syndrome in Maryland is critical because it is a very rare condition. Children with this disease are born normal and look fine when they’re young, so parents need to be aware of the possibilities and know the signs.”

When asked about something significant that the family lives by, Janelle’s mom provided the bible verse from Romans 5:3-5: Suffering produces perseverance, perseverance produces character, and character produces hope. She says “What we’re going through is a tough time and you need to have hope. It’s not on us, we’re walking with the Lord all the time and he has promised us the plans with prosperity. We don’t see it, but it will happen.”

For parents considering joining The Coordinating Center, Angela says to go for it! She also recommends parents keep track of documentation, which is so very helpful when enrolling in a new program. Angela says, “speak up with what you really need and be an advocate for your child because you know them best. There is so much out there and not everyone has the full picture, but somebody is going to have what you need, you just have to find it. Most importantly, give the whole story to the case manager so they are better prepared to help you.”

Robert

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Robert and his mother Jeneva are the dynamic duo, deeply committed to advocacy and equity for people living with disabilities. Both Robert and Jeneva have a passion for writing and advocating for others. So much so that Robert became a member of Little Lobbyists and a graduate of the Arc of Maryland’s Partners in Policymaking program within two years of graduating High School.

Robert is a very active 25-year-old. When he’s not busy advocating for others, he enjoys playing Challenger Baseball, taking classes at Upcounty Community Resources, Inc. and music classes at Montgomery College. Robert is also an artist and enjoys going to art museums and likes drawing paintings of animals, as well as doing abstract paintings. Robert has a unique painting technique, where he paints with his knuckles while using gravity to create brushstrokes. He also sometimes uses his medical equipment to make designs and stamps to create abstract art.

Robert has been receiving services from The Coordinating Center for 10 years, first with the Model Waiver Program, and now with the REM Program. He has had several coordinators who assisted him with finding a better medical supply company, obtaining coverage for his high-dose vitamin therapy, and navigating medical bills. Rob has a long history of acid reflux disease and aspiration pneumonia, which causes a high risk for all the complications of aspiration, including death. He needed to be tube-fed overnight (continuous pump feeds) to save his life.

Rob has never let these complications determine his future and enjoys sharing his story with others. “It makes me happy to advocate for others. I’ve shared my story at U.S. Senate press conferences and in Maryland’s General Assembly. This year I testified in Annapolis on the Self-Directed Services Act of 2022, on behalf of the Self-Directed Advocacy Network. This bill passed! And it became law on October 1, 2022. It will give me and others the support we need to keep living in our communities,” says Robert.

“My family doesn’t think of our lives in terms of “overcoming” narratives. Disability is a part of life and including people with disabilities in their communities is a matter of breaking down social barriers and working to incorporate adaptations. Everyone has the civil right to live in their own community,” says Jeneva, Rob’s mother.

When asked about a song or quote that he lives by, Robert shared the song “Don’t Stop Believin” by Journey and says that “it’s important to keep believing in yourself and to never give up.” Jeneva’s advice to someone considering joining The Coordinating Center is “Don’t be afraid to ask for what you need and challenge your coordinator to rise to the occasion. Remain steady in your belief that your child deserves supports to live their best life in their community, and not in an institution.”

 

 

 

 

 

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.