Igniting Change through Acceptance

April, World Autism Month and National Autism Acceptance Month (previously named Autism Awareness Month) is a time to publicly celebrate and promote acceptance of Autism, the fastest-growing developmental disability in the United States, with one in 36 children receiving a diagnosis, according to last month’s newly released report from the Centers for Disease Control (CDC). “Autism, a complex developmental condition affecting the patient’s ability to interact, communicate, and progress, has not one but many subtypes. First held in the year 1972 by the Autism Society, Autism Acceptance Month emphasizes the need for public awareness to promote acceptance, celebrate the differences, and be more inclusive towards autistic individuals around us.”1

In 2021, Autism Awareness Month was renamed Autism Acceptance Month to foster acceptance and ignite change through improved support and opportunities in education, employment, accessible housing, affordable health care and comprehensive long-term services for autistic people. Christopher Banks, President and CEO of the Autism Society of America states that the shift was necessary as “acceptance is often one of the biggest barriers to finding and developing a strong support system. Acceptance is so integral that the Autistic Self-Advocacy Network (ASAN) has been referring to April as Autism Acceptance Month since 2011, expressing that accepting autism as a natural condition is “necessary for real dialogue to occur.”  

We recently sat down with Sheri Weissman, Director, Autism Services for The Coordinating Center to learn more about the autistic community and services provided by the Autism Services team. 

What would you like Allistic (a.k.a. neurotypical) people to know about the Autistic community?  

“While I think that we’ve come a very long way in the almost 25 years that I’ve been in the field, as a result of increased awareness, there is still so much that we don’t fully understand about autism, and so much more that we as a society can be doing to be more inclusive to all in the neurodivergent population.”    

“As a neurotypical, my understanding of autism has been informed by both professionals and autistic individuals. While we neurotypicals have a lot to share based on our own experience with autistic individuals, the information that has impacted me the most has come directly from autistic people, either through reading or talking with them.”  

“I will share a few important things I frequently read and hear from those who know best:” 

  1. Eye contact can be incredibly challenging and, in some cases, painful for autistic people.  
  2. Language is incredibly important. Some autistic individuals prefer identity first language (an autistic person) while other individuals with autism prefer person-first language (an individual with autism). Some additional language that is seen as problematic when referring to autistic individuals includes (but is not limited to): low and high functioning, special needs, challenging behaviors, and other deficit-based language.  
  3. Always presume competence.   
  4. Being nonverbal or limited verbally doesn’t equate to having nothing to communicate. 
  5. Dr. Stephen Shore, an autistic professor of special education, is known for saying “when you meet one person with autism, you’ve met one person with autism”. This is one of the most important philosophies of the Autism Services team. We fully understand that having a lot of experience does not make us experts on the students that we serve. While our experience can provide some helpful guidance/advice to families, oftentimes a collaborative approach with a bit of trial and error is what leads to positive outcomes. 

What is Maryland’s Home and Community Based Services Waiver for Children with Autism Spectrum Disorder?  

“The Maryland’s Home and Community Based Services Waiver for Children with Autism Spectrum Disorder (a.k.a Autism Waiver), is a Medicaid funded home and community-based program that was created to support autistic kids between one and 21 year’s old who are considered at risk for an institutional placement. In order to qualify, a child/young adult has to meet three levels of eligibility: financial (cannot have more than $2,500 of assets in their name); technical (have an IFSP or an IEP that has at least 15 hours of special education and related services; have a current ASD diagnosis that’s been confirmed within the past three years; attend an MSDE approved educational program; can be safely managed in the home and community).”  

“The two most used services by our families include Intensive Individual Support Services (goal directed, focus on life skills) and respite (not goal directed, 1:1 adult support provided in the home, community, or at an overnight camp). Families can also access Therapeutic Integration (a center-based program focused on a variety of therapeutic goals); Family Consultation (e.g., support provided to parents based on presenting challenges with behaviors, life skills); Adult Life Planning (assist parent with plans for transition/adulthood); Environmental Accessibility Adaptation (adaptations made to the home to make it safer); and Residential Habilitation (out-of-home placement when behaviors become unmanageable at home),” 

What counties does The Coordinating Center serve and how does your team contribute to the success of the Autism Waiver program?   

“We currently serve Autism Waiver participants and their families in Dorchester, Harford, Howard, and Worcester counties. As the only agency that serves more than one county, we are in a very unique position to be able to advocate for individuals and families who have varying levels of access to much needed Waiver and non-Waiver resources. The Coordinating Center’s Autism Services team never misses an opportunity to sit on or initiate a committee or focus group to support participants and their families and the Autism Waiver. As co-facilitator of the State of Maryland’s Autism Waiver Service Coordinator focus group, I assist with bringing statewide concerns, challenges, and questions to the Autism Waiver Advisory Committee meetings. I also maintain regular contact with members of Maryland State Department of Education, MSDE and Service Coordinators across several jurisdictions which often focuses on what is currently being done and how we can do things better.”

“While COVID-19 presented a variety of challenges and changes to how we provided service coordination, The Coordinating Center’s Autism Services team presented supporting documentation for continued utilization of telehealth options for all service coordination activities which significantly benefits parents, who would no longer need to leave work or have to arrange transportation to attend an assessment meeting. It also benefited Service Coordinators who could complete required visits virtually if an in-person visit wasn’t possible. Our perspective and thoughts are often sought when there are decisions being made about policies and procedures, and we frequently share our families concerns and challenges with MSDE and Maryland Department of Health (MDH) so that the voice of one of the most important stakeholders is considered when decisions about the program are being made.”  

How has the program progressed over the years and where do you see it heading in the next five years?  

“Since I’ve been with the Waiver for over 20 years, I’ve had the opportunity to experience the Waiver’s evolution from having no registry, 900 available slots, and primarily serving kids in pre-school through elementary school to now having over 6,000 kids sitting on a registry, 1,500 available slots, and primarily serving students who are middle school age and older in which a large percentage are between ages 14 and 19. As the ages of individuals served has transitioned from very young to much older kids, we also saw a significant difference in both participant and family needs. I see the Waiver continuing to evolve while the number of individuals the Waiver serves will continue to grow. I also see The Coordinating Center’s Autism Services team continuing to advocate for Autism Waiver participants and their families as we have over the past 20 years.” 

 Tell us a little bit about yourself and your position at The Coordinating Center?  

“I first learned about autism when I worked at a therapeutic summer program for kids with autism, ADHD, and Pervasive Developmental Disorder (PDD) while in college. After working at a residential treatment facility for abused girls for a year, I spent the next two and half years with Pressley Ridges new autism wrap-around program in Pittsburgh that provided Discrete Trial and Floor time therapies. I worked with kids between the ages of two and half and 10 years old in their homes, schools, and the community, and it is here where I learned that I absolutely loved working with autistic kids and their families.”  

“When I moved to Maryland, I worked at Kennedy Krieger’s LEAP program during the day and part time with two autistic kids privately in the evenings. While working at LEAP, I pursued my Master of Social Work degree from the University of Maryland, Baltimore where I focused on program management with a health specialization and maternal child health sub-specialization. I stayed at my second-year internship and became a full-time international case worker while I searched for my perfect job. 

I recently celebrated my 20th anniversary with The Coordinating Center. I was initially hired as a Service Coordinator for the Autism Waiver and two years later, I was promoted to Program Director. As Director, I work closely with the team to ensure that we are continually meeting contract requirements and supporting our students and their families in the best ways possible. I also continue to maintain a small caseload, so I never forget both the joys and challenges of the Service Coordinator role. I’ve also served on multiple committees and focus groups over the years. Presently I serve on the Autism Waiver Advisory Committee and cofacilitate the Service Coordination Focus Group. 

 1 – Information taken from National Today

Individual Choice and Community Inclusion

March is Developmental Disabilities Awareness Month, a time to raise awareness about the inclusion of people with developmental disabilities in all facets of community life, and the barriers that people with disabilities still sometimes face in connecting to the communities in which they live. Each March, the National Association of Councils on Developmental Disabilities (NACDD) and their partner organizations work together to create a social media campaign for Developmental Disabilities Awareness Month that highlights the many ways in which people with and without disabilities come together to form strong, diverse communities. This year they selected artwork featured at local DC studio Art Enables and artist Jamila Rahimi to serve as logo imagery for DD Awareness Month.

For 40 years, The Coordinating Center has been committed to the concepts and frameworks of individual choice and community inclusion. The values of equity and inclusion, integrity and collaboration, as well as excellence, learning and impact drive the organization’s philosophy and approach to care coordination services. The Coordinating Center partners with individuals on things that matter most to them, by focusing on the individual’s goals, strengths and abilities. We recently sat down with Pamula Mills, PhD to learn more about this person-centered approach and the work The Coordinating Center is doing to partner with people with intellectual and developmental disabilities.

Can you tell us a little bit about yourself and your position at The Coordinating Center?

“I joined The Coordinating Center as its new Director, Coordination of Community Services (CCS) in November 2020. I am a clinical psychologist who is passionate about mental health and supporting people with intellectual and developmental disabilities. Prior to coming to The Center, I was the Program Director of a nonprofit in Washington, DC, responsible for the management of supported living, day habitation, and companion services for individuals with intellectual disabilities and psychiatric disorders.”

“As the Director of CCS, my primary responsibility is to provide programmatic and contractual oversight for the delivery of Coordination of Community Services, ensuring that all of the individuals we support receive the services they need to maximize their independence in the community. I am surrounded by an extraordinary team of Coordinators of Community Services, a Team Leader and Team Manager who are deeply committed to the individuals we are privileged to serve. I love my job because I enjoy seeing people grow and develop into their purpose.”

What is Coordination of Community Services (CCS)?

“The CCS program is a program of the Maryland Developmental Disabilities Administration (DDA), which enables participants and their families to gain access to critical resources and Medicaid Waiver services that encourage self-sufficiency, health and safety and real community participation. The Coordinating Center is one of several organizations that provide Coordination of Community Services for the DDA.” Learn more HERE.

When did The Coordinating Center become a provider for the DDA for Coordination of Community Services and how has it grown?

“Here at The Coordinating Center, our team is committed to the philosophy of self-direction. We believe individuals with developmental disabilities have the right to direct their lives and services. That is why in 2020, we joined the Maryland Developmental Disabilities Administration (DDA) as a provider of Coordination of Community Services. Our team is committed to is on assisting individuals with intellectual/developmental disabilities and their families in learning and gaining access to resources in their community, planning for their future, and accessing needed services and supports.”

“The DDA Program parallels many other programs at The Coordinating Center in terms of its mission to help the population develop from one phase of their lives to the other. The Coordinating Center originated with the purpose of assisting individuals to live in the community and in their home, which DDA is very similar. Intellectual Disabilities reached the Self-Advocacy Movement in the 1980’s and comes from a complex history of not understanding individuals with different abilities.”

“When I came on board in 2020, we had approximately 30 participants we were supporting in the Central and Southern regions of Maryland. It was a challenge in the beginning putting all the pieces together to establish the program because of how dynamic it is. By immersing ourselves into understanding the program and by establishing strong partnerships with the individuals and families we were honored to meet along the way, we grew the program exponentially. In just a short amount of time our CCS program has served over 600 individuals in Southern, Central and Eastern Maryland, nearly 400 of whom have chosen The Coordinating Center as their CCS Provider.”

What are the top four services that Coordinators of Community Services help individuals locate and access?

“First and foremost, we are focused on helping individuals understand the DDA Waiver programs. There are three waivers under the DDA: Community Support Waiver, Community Pathways Waiver, and the Family Supports Waiver. The DDA Waiver programs consist of services that support individual’s assessed needs. Coordinators assist individuals with assessing and locating programs such as Meaningful Day, Supportive Living, Habitual Day, Residential, and Respite Care. Among the top four services we coordinate most frequently are personal support services, employment services (training and locating positions), respite and residential services.” Click HERE to learn more about the DDA Waiver programs.

What is START and what are some lessons learned from participating in pilot program and how has it impacted service delivery beyond the pilot?

“In 2021, The Coordinating Center was selected to participate in the START Pilot program for the DDA in Central Maryland. START, which stands for Systemic, Therapeutic, Assessment, Resources, and Treatment, combines evidenced-based practices in community-based crisis prevention services for individuals with intellectual and developmental disabilities and mental health needs. Team members were selected to participate in a rigorous 19-week training course, which led the team to better assist individuals with these needs.”

“We were the only CCS agency to complete the START pilot, which resulted in a special invitation to join the Dual Diagnosis Capacity Building Institute (CBI) Collaborative with the National Association of State Directors of Developmental Disabilities Services. We are taking the lessons learned from the START Program and working alongside another team of professionals in developing strategies and policies for the state of Maryland in the intellectual disability and mental health field. Participation in START has resulted in better customer service and coordination of community services for people with dual diagnosis. We have a better understanding of the needs of individuals and their families and take a more empathetic approach to supporting this population.”

What sets The Coordinating Center apart from other providers?

“We are a small, but mighty team and we are growing. Our program has a very strong team structure that enables team members to develop individual growth by learning from each other. Our team thoroughly believes in the mission, and we enjoy the work that we do. Also, our training is top notch! We provide additional training for our team that goes beyond the contract requirements and that includes our center-wide approach to diversity, equity, inclusion and belonging. We are known for having a quick turnaround with the individuals and families we support and strong relationships. We are also uniquely positioned to serve people in multiple Medicaid programs, whether it’s transitioning them from one program to another or coordinating care between coordinators through different programs.

One of my favorite things we offer is a Virtual Cup of Joe with our team. Anyone can participate in our virtual offering, which is held on the third Friday of every month. You don’t need to be working with The Coordinating Center to attend. Come with your questions and learn more about The Coordinating Center and the work that we are doing to support people with intellectual and developmental disabilities.” Click HERE to learn more.

Where do you see the program in the next five years?

“I see us growing and expanding to the entire state of Maryland. We will continue to invest in our team to ensure that we have highly skilled Coordinators of Community Services. I’m also hopeful with the new administration’s commitment to “End the Wait List” that more people will be served, so that everyone can achieve their aspirations for independence, health, and a meaningful community life.”

Bringing Awareness to Rare Diseases

February 28th is recognized globally as Rare Disease Day. With nearly 7,000 known diseases worldwide, many without treatment and over 300 million people worldwide living with rare diseases, Rare Disease Day plays a critical role in helping to raise awareness among policymakers and the public about rare diseases and their impact on people’s lives.

MarylandRARE.org reports that there are “roughly three quarters of a million Marylanders living with a rare disease, half of whom are children.” Fortunately, there are resources to support Marylanders’ health and wellbeing, such as the Rare and Case Management (REM) Program, which provides community-based care coordination services for people with specialized health care needs, providing access to high quality, medically appropriate health care services in a cost-effective setting outside of a managed care organization.

We recently sat down with Celinda Carr LCSW-C, CCM , Director, REM Program to learn more.

What qualifies a disease as “rare”?

For a disease to be considered rare according to the FDA, “a disease or condition must affect less than 200,000 people in the United States.” There are over 300 diagnoses that qualify for the Rare and Expensive Case Management (REM) Program, Maryland’s, case managed, fee for service alternative to HealthChoice Managed Care Organization (MCO) participation, which was established in 1997 by the Maryland Department of Health. What may be surprising to learn is that not all REM diagnoses are rare, however they are all expensive to treat. For many qualifying diagnoses, treatments can help, but often they are conditions that cannot be cured.

What services are provided through the REM Program?

“The Coordinating Center provides care coordination services for the REM Program. The main goal of the REM case manager is to help the recipient reach their highest level of functioning capability. This is done through care coordination, home visits and a variety of other case management services (e.g., assessment of client needs; client/caregiver education; caregiver support services; development of treatment plan; coordination of provider services; and follow-up of client’s progress). In addition to care coordination, participating individuals are eligible to receive all Medicaid covered services, as well as optional services, which may require preauthorization. Basic services under the state plan include medically necessary: physician visits, inpatient hospital services, pharmacy, home health services, radiology and lab services, durable medical equipment, disposable medical supplies, therapies (physical/occupational/ speech/language) and assistive technology. Optional services may include medically necessary: private duty nursing and nursing assistance, nutritional supplements, and dental care.”

How does one qualify for the REM Program?

“To qualify for the REM Program applicants must be eligible for Maryland Medical Assistance (Medicaid) and must have a REM qualifying diagnosis, which are listed on the REM Intake Referral Form. Individuals may not be eligible for the REM program if they already have Medicare. The vast majority of people supported by our Clinical Care Coordinators (licensed social workers and registered nurses) have genetic disorders, neurological conditions, metabolic conditions, lung conditions, developmental disabilities, physical disabilities, and/or chronic diseases. Often, it is difficult for them to live independently without connection to the proper resources, consistent medical follow-up and community supports. The top five diagnosis we see annually are Cerebral Palsy (Diplegic and Quadriplegic), Microcephaly, Quadriplegia, Hydrocephalus and Cleft Palate and Spina Bifida (which are tied).”

How long can an individual receive REM services?

“We provide care coordination for individuals as young as newborns through age 64. Each REM qualifying diagnosis has age out criteria associated with it. Some diagnoses age out at age 12, many at age 21, and still others at age 65. There is no cap on the number of participants who can be enrolled in the program. This past year, we served 4,477 participants (74% were under the age of 21), which is the highest number of participants in the history of the REM program! We provide services for clients in all counties across the state of Maryland, but we see the highest concentrations of clients in Prince George’s, Montgomery, Howard, and Baltimore City and County.”

Can you be on a Medicaid Waiver and the REM Program?

“Yes! An individual can be enrolled in the REM Program and some Medicaid Waivers or Medicaid Programs; however, you cannot be on two Medicaid Waivers at one time. So, for example you could be enrolled in the REM Program and the Autism Waiver, but you couldn’t enroll in another Medicaid Waiver at the same time. You could however be enrolled in two Medicaid programs, for example the REM Program and the Community First Choice Program. We have REM participants who are on a variety of Medicaid Waivers (e.g., Autism Waiver, Home and Community-Based Options Waiver, DDA Waivers – Family Supports, Community Supports, Community Pathways).

Can you enroll in the Model Waiver program while you are enrolled in the REM program?

“No. To be eligible for Model Waiver you must not be eligible for any other Medicaid funded programs.” Visit our website to learn more about the Model Waiver program.

How did the program respond to the transition to virtual after COVID?

“Our Clinical Care Coordinators have always checked-in with our clients every month to assess their wellbeing and assist with any issues that arise. Face-to-face visits in the community are also a requirement for all REM participants. These visits occur at varying intervals – with some receiving visits every three months and others every six months or annually. When the pandemic hit, our monthly contacts never changed, but we had to create a new plan to substitute for face-to-face visits. Our REM clients are among the many Marylanders who are medically complex and thus at high risk for COVID infection. We quickly made a plan to utilize our modern technology and visit virtually with clients. Many of our clients were not familiar with the virtual platforms used by The Center, but the Federal government relaxed some HIPAA guidelines which allowed common applications, such as FaceTime or WhatsApp to reach clients. As a result, I am proud to say that we have been able to connect virtually with 98% of our clients during the public health emergency related to COVID. As the public health emergency winds down, we are once again beginning to connect face-to-face with our clients.”

What is your favorite part about the program?

“Most of our REM Clinical Care Coordinators will tell you that face-to-face interactions with clients are their favorite part of the program because there is no substitute for being in person with someone, being able to engage and build a rapport. As the Director, the impact that I see the coordinators making in the lives of our clients and caregivers, is awe inspiring. We have countless examples of life-changing events – a parent who can return to work because we were able to demonstrate the need for a private duty nurse to care for their child during the day, a child who becomes independent at home and school when they receive a piece of durable medical equipment that we helped to facilitate.”

Can you tell us a little bit about yourself and why you chose to work The Coordinating Center?

“I knew from a young age that I wanted to be in the health care field. I volunteered as a Candy Striper for my local hospital while in my teenage years. In college, I learned about the field of Social Work and the role a Social Worker can have in the medical field. I attended the University of Maryland Baltimore, graduated with my Master’s of Social Work and quickly began working in hospitals. I have been a Certified Case Manager (CCM) since 1995 (the CCM credential began in 1993). I give kudos to my supervisor way back then for being a visionary and telling me how important this certification would become.”

“Around 2010 I had a patient in the hospital who required a ventilator and whose family desperately wanted to care for her at home. It was then that I learned about the REM program and the work of The Coordinating Center. Ultimately this young woman discharged home and was enrolled in the program. That event was the catalyst that led me to The Coordinating Center. It made me curious about what happens post-discharge. I knew that I wanted to be a part of clients’ continued success in the community. I have been with The Coordinating Center for over 10 years now, started as a Clinical Care Coordinator, and transitioned to the REM Program Director in 2019.”

Can you tell us a little bit about your position at The Coordinating Center?

“As Program Director, I provide oversight of the REM Program, ensuring that all 4000+ REM clients are receiving appropriate care coordination services; however, it is our Clinical Care Coordinators, Team Managers, and Associates who are the glue. They make sure that all individuals we support have access to high quality, medically appropriate health care services and community-based services and are the ones who advocate daily for their wellbeing. I am inspired each and every day when I see their hard work. I know we are making an invaluable difference in the lives or our clients and their caregivers. I see it, I hear it, and I feel it!”

 

40 Years of Supporting Independence, Health, and a Meaningful Community Life

January 3, 2023

By: Renée Dain, SVP, Strategic Partnerships & External Affairs and Jani Pierre, Marketing Intern

The Coordinating Center, a trusted leader in care coordination services in Maryland for people living with disabilities and complex medical and social needs since 1983, is celebrating its 40th anniversary this year.

“We love our history and are excited about our future,” said Dr. Teresa Titus-Howard, President and CEO of The Coordinating Center. “As we expand and establish a bold vision for serving more people, we will carry forward and build upon the remarkable legacy of those who paved the way for our organization.”

“We have big plans for our 40th Anniversary in 2023, beginning with our new anniversary logo, featuring our beloved tagline, We Are Stronger Together! We chose this tagline because we truly believe at The Coordinating Center that building a culture that is diverse, equitable, and inclusive drives innovation, productivity, results, customer satisfaction and ultimately, a sense of belonging for our coworkers and the people we are privileged to serve each day,” said Dr. Titus-Howard.

We recently sat down with Ms. Nancy Bond, Senior Vice President, Medical Legal Services who has been with The Coordinating Center for over 39 years, to learn more about how The Coordinating Center came to be.

How did The Coordinating Center get its start?
“The Coordinating Center was founded as the Coordinating Center for Home and Community Care, Inc. (CCHCC) and was established in 1983 through a federal Maternal Child Health Bureau – Special Projects of Regional and National Significance (SPRANS) grant by a group of Maryland health, education, and social services leaders along with parents, who believed that children with complex medical needs would be better served in their homes, than in hospitals and long-term care settings. The Coordinating Center designed a model of care coordination to safely affect their transition from institutional care to homes in the community with their family and then to include them fully in communities.”

Who was Katie and Julie Beckett and what impact did they have on The Coordinating Center?
“Our founders were inspired by Katie Beckett, a little girl from Cedar Rapids, Iowa and several Maryland children who were forced to live in long-term care hospital units due to a lack of funding for home care. At four months of age, Katie was diagnosed with viral encephalitis, which left her partially paralyzed, with severe respiratory compromise, and needing 24-hour care. Katie’s care was supported by a $1 million maximum insurance policy, but when that ran out it forced her family to seek alternative options to fund her care. Katie qualified for Medicaid, but it would only cover her care if she remained in a hospital for that care. Her mother Julie Beckett was a fierce advocate, who, through her congressman, petitioned former President Ronald Regan to advocate for change in the Medicaid rules. President Reagan called for a dramatic change in the Medicaid rules, establishing waiver programs. The first Katie Beckett Waiver was signed in 1981, which allowed Katie and other individuals with disabilities like her, to receive their care at home while retaining their Medicaid coverage. This story inspired those associated with The Coordinating Center to establish a waiver program in Maryland to help facilitate the care for individuals with complex needs, so that they are able to live a full life.”

“We recently got in contact with Julie Beckett’s family to establish the Julie Beckett Award for Outstanding Child Advocacy in her honor. There are so many incredible parents like Julie who have brought tremendous change for children and youth with disabilities and/or complex medical needs through their advocacy efforts.”

Katie Beckett, 3 in 1981 leaving a hospital in Cedar Rapids, Iowa, with her parents
after a victory over health care red tape. United Press International

What is the Model Waiver?
“In Maryland, the Katie Beckett Waiver is called the Model Waiver. The very first recipients of the Model Waiver came on in 1985. There were some challenges at the beginning because not all stakeholders thought that these children could be safely cared for at home or attend school. With the help and approval of many brave doctors, nurses, and parents, we had to prove that, with appropriate supports, the care provided in the hospital could be provided at home. Through these efforts, a service system that supported home care evolved with training for pediatric nurses, changes in the availability of equipment and supplies and the establishment of safety protocols. This included protocols for the provision of nursing services in schools and the transportation of special equipment including oxygen tanks on school buses. Anytime a system is being changed there can be institutional and individual barriers, but The Coordinating Center’s advocacy and collaboration was proof that it could be done.”

What role have you played in shaping The Coordinating Center?
“In 1984, I left my work as a special education teacher and accepted a position at The Coordinating Center to continue my work advocating for full inclusion for children with special health care needs in school and community settings. With the collaboration and guidance of our first nurse case managers, I developed my skills as a case manager, working with participants and their families while continuing my education and rehabilitation advocacy. In the mid-1990s, The Coordinating Center began to develop our life care planning services and eventually, a new division emerged, our Medical Legal Services division. In 2000, I completed my training and certification in life care planning and in 2002, I achieved my certification as a case manager. Along the way, I served as the Associate Director of The Center and then the COO until 2019, when I transitioned to the full-time position of Senior Vice President, Medical Legal Services. This gave me an opportunity to expand that division, so that we can offer specialized case management services in addition to life care planning.”

Where do you see The Coordinating Center headed over the next five years?
“Over the next five years, The Coordinating Center will need the meet challenges in healthcare due to the overwhelming pressures that COVID and the economy have placed on health, education, and social service systems, statewide. Even though it is going to take years for the systems to regain their footing, I believe The Coordinating Center will always rise to the occasion in caring for each client. The Coordinating Center has always been known to partner with families, individuals, service systems and providers to advocate for individuals regardless of the complexity of their needs and circumstances. At the end of the day, if we have improved their lives, we have met our goals and achieved our mission.”

Among other special activities and events planned in this 40th anniversary year of The Coordinating Center are:

  • 40th Anniversary Celebration and CenterFlix Gala on May 11, 2023, at 6:00 p.m. – 9:00 p.m. at the American Visionary Art Museum in Baltimore. Proceeds benefit The Coordinating Center’s Family Resource Fund. This fund is vital in supporting gaps in care for our clients (e.g., assistive technology, adaptive equipment, respite, emergency housing support). Learn More HERE.