At the age of 34, Ronea, a mother of three children and a manager of a clothing store, was hit by a car that resulted in a Traumatic brain injury and other disabilities. Unable to walk or live on her own, Ronea spent the next seven years living in a nursing facility and worked hard to regain her independence through therapy and rehabilitation services. Determined to move out of the facility and into a home of her own, Ronea was introduced by the facility’s social worker to The Coordinating Center who helped her transition to the Home and Community-Based Options Waiver. With the help of The Coordinating Center and the Waiver, Ronea was able to move out of the nursing facility and into a home of her own.

“The Coordinating Center has been a huge help. They put me in a lovely apartment. And let me know I can call and talk to them whenever I have a problem. They helped me to get my life in order. My apartment is a one bedroom, nicely lit up by the sun and easy to get around. It is easy to keep clean and I love it,” said Ronea.

Ronea says life was good before the accident, she enjoyed playing games, dancing, taking walks and listening to spiritual music. “The accident slowed me down. I can’t do what I used to do, but it’s okay, I’ll get back one day. I’m alive and I am finding new things that I enjoy.” Ronea has learned to embrace new hobbies, such as painting bird houses and making shirts, and continues to do the things that she enjoyed before the accident. “I like to do things with my children, swim, cook and even clean.”

Ronea continues to make strides in regaining her independence. “I walk with my walker, I participate in therapy, and I really am looking forward to starting therapy where I can meet other people who are disabled like myself.”

Ronea’s advice to anyone considering joining The Coordinating Center is to join as soon as possible. She says, “I like how The Coordinating Center puts everything together and finds out what you like and do not like, it is a good place to help you rebuild your life that you lost.”

Nadiya’s Story

Eighteen-year-old Nadia, whose name means “hope,” loves fashion, and she likes to make a statement with sequins, sparkles, rhinestones, and fun hair accessories. She’s also really into Disney movies like the Little Mermaid and Encanto and music by Fleetwood Mac, Steely Dan, even Hamilton. Her family describes her as very pleasant, easy going and a great sense of humor.

While Nadiya is always laughing, life hasn’t always been easy for Nadiya and her family as she was born with a rare disease that took ten years for doctors to fully diagnose. Nadiya has a de novo T374I Mutation of the KCNB1 gene, which is known to cause seizures and other disabilities. This gene is so rare there are only 150 known cases – with only one other child diagnosed with the same variant as Nadiya. Nadiya’s seizure disorder, Lennox-Gastaut Syndrome is impacted by the KCNB1 gene, which makes her seizures unpredictable and intense beyond typical epilepsy. By the age of 13, Nadiya’s seizures had reached crisis level to the point where she had 26 in one day over a nine-hour period. “She was having life threatening seizures in her sleep, it was terrifying.”

“When Nadiya was born, her future was uncertain, as doctors did not think she would ever be able to sit, communicate or walk,” said her mom, Jill. “We had no idea what her future would hold, but we had hope. My husband David said something early on that became our mission. It is our job to give Nadiya the best quality of life she is capable of having. It will not be the same as her sister’s life and that will be ok.”

With the support and advocacy efforts of The Coordinating Center and Nadiya’s medical team, Nadiya was able to transition off of the Model Waiver Wait List she had been on for six years. Within six months of enrollment in the Model Waiver, Nadiya began to receive nighttime nursing services that her mom describes as “life lifesaving and has allowed Nadiya to safely attend school and sleep at night.”

Through caring for Nadiya, her mom Jill, a former Language Arts teacher for middle school children, become an advocate for other children living with rare diseases and complex medical needs. In 2016 Jill began to work at the Parent’s Place of Maryland, where she was able to use her experience to help other families. Since then, Jill has participated on many committees and groups related to special needs children at Mt. Washington Pediatric Hospital, including chairing their Family Advisory Counsel.

Jill has advocated for investing in the field of pediatrics, children’s hospitals, the ketogenic diet, and for other numerous issues and programs for families with children with complex medical needs and disabilities. From 2018 through 2020, Jill met with politicians in Annapolis to advocate for increases in Medicaid reimbursement rates for nursing services. Through her testimony, Jill expressed that her greatest fear was her child dying from a seizure in the middle of the night that she couldn’t stop because she was so exhausted, she slept through it. Through Jill’s advocacy and the advocacy efforts of others, nursing rates were increased by three percent.

Jill’s advice for someone considering The Coordinating Center is to “do it.” “Our Coordinator is a calm voice, who is there to sort out the pieces and help find solutions. I can count on her to help when there is a nursing crisis or any other need my child has. I tell families the earlier you reach out to The Coordinating Center, the sooner you can get connected with care coordination and access services that are life changing,” said Jill.

 

Leo loves to listen to music and watch television. Among his favorites are music by Nick Jonas and the Jonas Brothers and shows on Netflix and YouTube. Leo also enjoys playing games on his Nintendo Switch and making his own gaming videos for YouTube, in addition to spending time with his friends, family and teachers and staff at school.

At the age of nine years old, Leo got connected to The Coordinating Center for care management services through the Rare and Expensive Case Management Program, which provides individuals with access to high quality, medically appropriate health care services in a cost-effective setting outside of a managed care organization. Within two years of enrolling in the REM Program, Leo got connected to the Medical Legal Services Division at The Coordinating Center to obtain additional support through his Special Needs Trust. His coordinators have assisted with attending appointments as needed, obtaining equipment sometimes not covered by insurance, ensuring Leo can participate in school activities and events with transportation assistance and much more.

Leo says getting help from his coordinators at The Coordinating Center has made it easier for him to get out of the house and do things in the community. “I was born with CP, Cerebral Palsy. I can’t do much by myself and I need a lot of help with daily tasks,” said Leo. Leo has learned to rely on others and be open to trying new things. He says humor helps him overcome challenges. “My condition also affects my speech a lot, so it is hard for me to communicate by talking, especially with new people.” With the support of his care coordinators, Leo has learned to advocate for himself and has been able to connect to more after school activities, including school dances, allied sports (soccer and bowling) and attending Best Buddies meetings.

Leo is grateful for the support he is receiving from The Coordinating Center and looks forward to graduating high school in 2024. He plans to work with his team and others towards employment and living independently in the community. His advice for anyone considering working with The Coordinating Center is to be open to trying new things. It’s worked for him and he’s living his best life.

Strength, faith, and love are three words that come to mind when speaking with Darren’s mother Shereé about how she has navigated life these last sixteen years, ever since her son Darren nearly drowned at the age of five at summer camp. The prolonged time under water caused anoxic brain damage and left Darren in critical condition, which resulted in permanent disabilities and complex medical needs (i.e., seizure disorder, cerebral palsy, spinal cord fusion, ileostomy, tracheotomy, Baclofen pump).

While under the care of a team of specialists at a local children’s hospital, Shereé and her family were introduced to the Model Waiver, a Maryland Medicaid program, which allows medically fragile individuals before the age of 22 years to receive the medical care they need in their own home. Without the support of the Model Waiver and The Coordinating Center, Shereé and her family would not have been able to afford care to address Darren’s nursing facility level of care needs in the home. “We were able to bring Darren home with the Model Waiver and with the support of our Clinical Care Coordinator at The Center. Not only did Darren benefit from and receive assistance from our coordinator, but the entire family benefited from our coordinator’s compassion and knowledge. She held my hand as I went through the transition of caring for an abled child to a child with disabilities.”

Years following Darren’s catastrophic injury, Shereé and her legal team got connected to The Coordinating Center’s Medical Legal Services Division for additional support at home and in the community. Darren was matched with a certified case manager and care management associate to supplement the support available through the Model Waiver/REM Program. Through comprehensive care coordination services, Darren was able to gain access to benefits in the community, develop and initiate a plan for transitioning into adult services after high school, receive support in scheduling and attending medical appointments, ensuring access to medications and supplies, navigate equipment concerns, transition nursing agencies to ensure more consistent support at home and much more.

Darren’s mom says he finds joy in being surrounded by the people. “Darren is non-verbal, but he has always been a jokester. He loves it when people talk to him and enjoys going on excursions in the community. He loves listening to music and watching America’s Got Talent,” said Shereé. Darren recently transitioned from the Model Waiver to the Rare and Expensive Case Management (REM) Program. REM provides Darren with access to high quality, medically appropriate health care services in a cost-effective setting outside of a managed care organization. With the support of family, school and the care management team, Darren has been able to live in his own home in the community with supports and he will soon graduate high school at the age of 21.

Shereé gets through life by leaning in on her faith, embracing laughter and staying positive. “It’s very easy to look at what Darren cannot do, but I choose to change my mind set and focus on what he is able to do. Shereé’s advice for someone considering The Coordinating Center is to “just do it.” “I did not realize how much support I received, until I decided it was too much for me to do myself. Darren has twelve different specialists, that’s a lot of doctor’s appointments! Having someone to hold your hand through life’s transitions is an incredible gift. Darren’s coordinators have helped us through the transition of nursing providers, applying for guardianship, SSI and so much more! It’s an emotional journey, so having someone to check in and see how you are doing is very helpful.”

Wyatt is a very active six-year-old who loves to play with his hands, climb and crawl. He also enjoys engaging with others and making those around him laugh. People are drawn to Wyatt because of his contagious laughter and wild white-blond hair.

Wyatt was born with a genetic condition that has not yet been scientifically determined. He has many complex medical needs, such optic nerve hypoplasia, significant vision loss, sleep apnea, epilepsy, chronic lung disease, and hearing impairment. With a long list of medical conditions Wyatt’s family is always on high alert for seizures and other illnesses. “We do not go out a lot because of his limited mobility and needs. It can feel very isolating sometimes, not being able to do the same things that our friends are doing with their children” says Wyatt’s mom Lori. At the same time, Wyatt’s family has never let his limitations stop him or the family from being active. Wyatt is always included in family vacations and recently participated in indoor skydiving with his family.

Two years ago, Wyatt’s family enrolled in the Model Waiver Program with The Coordinating Center. With limited family members living locally, the family has had to learn a lot of new things to care for Wyatt. Fortunately, working with The Coordinating Center has been a game changer. Lori expressed how much having Wyatt’s coordinator has helped not only her son, but also her family. “The biggest thing is having someone to bounce ideas off.” It is helpful being able to have someone to express concerns to and someone who can coordinate care for their son. Wyatt’s Coordinator has been an extension to his medical home, ensuring communication with and among his pediatrician and other providers is clear, frequent and timely. “Knowing that we have support is super helpful because we do not get it anywhere else,” says Lori.

When asked about a motto that Lori lives by, she immediately shared the quote she passes daily in her kitchen: “The world needs who you were meant to be.” Lori, who is a special education teacher, never expected the challenges she and her husband have been faced with when she wanted to start a family. She says, “Wyatt is meant to be here and to share his true self with the world.”

Lori’s advice for someone considering joining The Coordinating Center is to be persistent, knowing that the enrollment process for a Maryland Medicaid Waiver’s isn’t easy. “Don’t be afraid to ask for help. Make sure you are up to date on all the things that you need to do with your coordinator. Share all the pieces of your child’s needs. Remember that this is a process and there is a light at the end of the tunnel and there is some relief that will come from that,” said Lori.

Five-year-old Lorenzo loves to play with robots and build things, enjoys singing, dancing and drawing and the outdoors. He’s compassionate, always giving, and very protective of his younger brother Antonio. Antonio, who is 18 months younger than Lorenzo, is fascinated by Mr. Potato Head and all things Toy Story. He enjoys playing video games, listening to music, and drawing. Their mother Ciera says, “anyone that knows Antonio will say he marches to his own beat. He’s creative, determined and has a contagious smile.”

Both boys are nonverbal and on the Autism Spectrum. Recently, Lorenzo was diagnosed with ADHD and recommended for Applied Behavior Analysis (ABA) Therapy. Caring for the boys is a lot for Ciera, who is a single mom. Recognizing Ciera needed some respite and support, the pediatrician’s office referred the family to VIPhysicians&Kids at The Coordinating Center.

Ciera says that it is lonely and overwhelming at times, especially since her boys are non-verbal. The boys use an AT Device which is helpful, but it has its limitations. “No one explains the challenges ahead. I get anxiety about them being safe. I worry about elopement. I also never thought that I would continue to make sacrifices between having a career and taking care of my children. I never thought my family could face eviction because people don’t understand that Autistic children can be loud. Most neurotypical people don’t understand Autism and don’t realize that finding childcare is difficult.”

“I am very grateful and blessed to have the opportunity to work with the VIPhysicians&Kids Care Team over the past three years. VIPhysicians&Kids focuses on the wellness of my children, but also myself as their caregiver and advocate to ensure that my family continues to thrive,” said Ciera. Working with The Coordinating Center, Ciera and her boys gained access to a wide range of supports and services, such as a Parent Advocate for help with IEP meetings,  recreational activities and groups, ABA services, toileting tips, elopement prevention, support groups for special needs families, therapy and service dog resources, respite, summer camps, advance planning, legal guardianship resources, disability legal services, childcare, medical assistance, utility and rental assistance, eviction prevention, first-time home buyers program and career guidance for mom. Through The Coordinating Center’s Family Resource Fund, the boys will soon have the opportunity to participate in swim lessons and learn an important life skill- that of swimming.

“Everyone at The Coordinating Center is about helping the family and kids. If you have questions don’t feel like you can’t ask a question. Be a part of the process, let them support you and your kids.” Ciera says journaling helps her calm the loud noises in my head when she is feeling overwhelmed. A quote that she lives by is this: “If you can’t figure out your purpose, figure out your passion. For your passion will lead you right into your purpose.” — Bishop T.D. Jakes 13.

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.”

Entrepreneur, inventor, advocate, mentor, these are just a few of the incredible roles Josh Basile has taken on since his catastrophic spinal cord injury in 2004, which left him paralyzed below the shoulders. Josh, who is a former client of The Coordinating Center is now a practicing medical malpractice attorney, who graduated law school Magna Cum Lade in 2013 from The University of the District of Columbia David A. Clarke School of with the help of technology, caregivers, family and friends.

Shortly after Josh’s injury, he founded the Determined2heal Foundation, Inc. which helps simplify the difficult transition into life with paralysis for families living with a spinal cord injury. “About 10 months after my injury I realized that I compiled thousands of pages of information and I wish I could’ve made it digestible for myself within the first weeks and months after my injury” says Josh. Recognizing the importance of mentors in a newly injured person’s life, Josh cofounded SPINALpedia.com, an online video mentoring website. Today, thousands of community members and videos are available 24/7. Each member and video have a unique set of physical functionality tags pairing relevant mentors and videos to those searching on the website.

Determined to continue to help others, Josh invented Slingshot Golf, a new sport which allows both able-bodied and golfers with disabilities to play together on a golf course. With his patented Pendulum Putting device, those with physical limitations can now putt a golf ball anywhere on a golf green or on a miniature golf course. Most recently, Josh has championed a smart phone app to the US Market called, fuelService, which pairs gas stations to pump gas to drivers with disabilities who need assistance. Initially developed in the U.K., fuelService is now available in the U.S., to over 5,000 gas stations across the country thanks to Josh.

Josh has a profound love for the outdoors. He enjoys adaptive sailing, indoor skydiving, skiing, being around Annapolis and the beautiful waters, and spending time with family. He says “It’s a great life when you get out there and experience the world around you. Too often our minds and what we focus on holds us back. Before my injury I did things 1 million ways, but after my injury I get to do things 1 million new ways and all of that can still be super meaningful. I’m a believer with a full dose of hope, a willingness to try and a little creativity, most anything is possible.”

Among the many organizations who have supported Josh over the years is The Coordinating Center. “The Coordinating Center was my guide and support on the ground to make sure that I didn’t have to do it alone. Especially when I was a teenager, having someone that knew how to navigate independent living and government supports really was crucial, and I learned how to be my own best advocate, while learning the rules as well so that I could have a say in what my care was like in the community and how to live independently. There’s nothing better than working with a team that is knowledgeable and that cares” Josh voiced.

Josh’s proudest moment is when he became a father in February 2022 to his first son, Calder. He loves spending quality time with his son, so much that he teamed up with John Hopkins students to create a baby wheelchair carrier that mounts to his chair. Now Josh can hold and physically interact with Calder without someone else having to hold him. Josh loves finding new ways of bringing independence, by using assistive technology to break down barriers. He explains “I’m dependent on technology, family, and caregivers, but I’m also independent through them. It takes a mindset where you’re not afraid to ask and receive help.”

A quote that Josh loves is “never, never, never give up!”. Josh says, “Often in the paralysis community, your body becomes physically paralyzed and during the early days it’s really tough to go from a fully independent lifestyle to a dependent one. I am living proof that nothing is impossible”.

Rob and his mother Jeneva are the dynamic duo, deeply committed to advocacy and equity for people living with disabilities. Both Rob and Jeneva have a passion for writing and advocating for others. So much so that Rob 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.

Rob 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. Rob is also an artist and enjoys going to art museums and likes drawing paintings of animals, as well as doing abstract paintings. Rob 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.

Rob 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 Rob.

“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, Rob 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.”