By: Renée Dain, SVP, Strategic Partnerships and Sherell Townes, Program Director, Coordination of Community Services for DDA

October this year holds special significance, as it commemorates the 50th anniversary of the Rehabilitation Act of 1973 and National Disability Employment Awareness Month (NDEAM), which aims to raise awareness about disability employment issues and promote the inclusion of individuals with disabilities in the workforce. The Rehabilitation Act of 1973 was the first federal legislation to address access and equity for people with disabilities. which served as the foundation for the subsequent enactment of the Americans with Disabilities Act of 1990. The history of NDEAM traces back to 1945, when it started as a week and focused only on people with physical disabilities. Later, it expanded to a full month, and its name and scope evolved to acknowledge the importance of increasing the workforce inclusion of people with all nature of disabilities. 

In observance of NDEAM and in tribute to the 50th anniversary of the Rehabilitation Act, the U.S. Department of Labor’s Office of Disability Employment Policy has chosen the theme “Advancing Access and Equity: Then, Now, and Next” to both champion NDEAM and honor this important milestone. This annual observance is a vital opportunity to recognize the value and potential of individuals with disabilities in the workforce. It’s a time to celebrate their achievements and renew our commitment to fostering inclusive workplaces. In this blog post, we will explore with Sherell Townes, Director of the Coordination of Community Services Program, the significance of NDEAM and how Coordinators of Community Services play a pivotal role in supporting disability employment.  

What are some of the obstacles that individuals with disabilities face with accessing employment?
Although there are resources to support individuals in their pursuit of employment, individuals living with disabilities often encounter formidable obstacles preventing them from achieving their desired opportunities. Oftentimes, opportunities are turned down due to the inhospitable nature of the workplace environment. This can include inaccessible office buildings, restrooms, or workstations, making it difficult or impossible for people with mobility impairments to navigate the workspace. Businesses may not be equipped with assistive devices and technologies that would aid in the person’s ability to be effective in their position.  

Beyond the physical realm, there exists a social dimension to the problem, which can be challenging to address due to employers’ inadequate or lax enforcement of policies regarding inclusivity. Discrimination and biases can create social barriers for individuals with disabilities. Employers may have preconceived notions about their capabilities or be unwilling to provide necessary support and accommodations. Some policies and regulations inadvertently create employment barriers for disabled individuals. For example, disability benefits can dissuade some from seeking employment out of fear of losing those benefits. Additionally, current policies often fail to account for individuals requiring highly specialized work accommodations. 

For individuals with communication disabilities, such as speech or hearing impairments, there may be challenges in effectively conveying information during job interviews or while performing job tasks. Not all workplaces are equipped with Braille materials or tools, such as Braille signage, documents, or equipment with Braille labels. This lack of accessibility can create significant barriers for individuals who rely on Braille for reading and communication. 

Overcoming these obstacles requires a concerted effort from employers, policymakers, and society to promote inclusivity, awareness, and accessibility in the workplace. Legal protections, reasonable accommodations, and initiatives that support diversity and inclusion can all contribute to improving the employment prospects for individuals with disabilities. 

What are the benefits of promoting disability inclusion in the workplace?
The benefits of strong inclusion policies and practices in the workplace create a culture that is supportive and welcoming to all differences. It minimizes stigmas and draws awareness to biases that would otherwise make it difficult for individuals, such as those with visible and non-visible disabilities, to flourish. There are millions of individuals with disabilities who desire to be fully integrated in the workforce and by promoting disability inclusion policies and practices, individuals will have equal opportunities for employment, advancement and will be compensated fairly. Efficient inclusion practices provide individuals with greater job satisfaction as they can fully immerse themselves in the work culture.  Policies would therefore be structured in a way that accommodates those who require a greater level of support to be successful in their position. This would directly impact retention as individuals would be better able to keep up with the ongoing requirements, training, and their increasing responsibilities.   

How do Coordinators of Community Services support disability employment? 
Coordinators of Community Services support the philosophy of Employment First, a concept that is driven by the Maryland Developmental Disabilities Administration (DDA) to facilitate the full inclusion of people with the most significant disabilities in the workplace and community. Under the Employment First approach, community-based, integrated employment is the first option for employment services for youth and adults with significant disabilities. The guiding principle of Employment First is that all individuals who want to work can work and contribute to their community when given the opportunity, training, and support that build upon their unique talents, skills, and abilities.  

Coordinators of Community Services (CCS) utilize person-centered planning tools such as Charting the Life Course and the Supports and Services Planning Tool, to assist individuals, and those that support them, develop a vision for their life, set goals and identify needed supports and services, including employment. The results from these tools become the framework for the development of the individual’s Person-Centered Plan (PCP). For identified services/goals, the CCS navigates resources that match the individual’s needs. Once the connection is made between the provider and the client, the CCS provides ongoing emotional support, monitoring of services and continued assessment of the individual’s needs, wants and desires.   

When employment is identified as a goal, the CCS connects the individual to employment providers funded by the DDA and helps facilitate access to other providers, such as the Maryland State Department of Education – Division of Rehabilitation Services (DORS). The mission of DORS is to provide leadership and support in promoting the employment, economic self-sufficiency, and independence of individuals with disabilities. DORS provides personalized support and employment services to eligible job seekers with disabilities. 

What are some resources (organizations, programs, tools) that can help individuals with disabilities find employment?
DDA partners with over 200 providers/vendors that help with finding employment for individuals with disabilities. These providers are accessible by clicking HERE for Maryland’s Provider Search. 

The Maryland State Department of Education – Division of Rehabilitation Services (DORS) helps people with physical, emotional, intellectual, developmental, sensory and learning disabilities go to work and keep their jobs by providing services such as career assessment and counseling, assistive technology, job training, higher education and job placement. To locate the closest DORS office, CLICK HERE. You can also learn more to see if DORS is right for you by clicking HERE. 

The Maryland Department of Disabilities has comprised a job seeker fact sheet library, which answers common questions and concerns about employment and disability. Click HERE to access the library. 

What is the Employed Individuals with Disabilities Program (EID)?
Access to healthcare and health insurance is critical for many individuals with disabilities. The cost of healthcare and concerns about losing coverage can be significant barriers to seeking and maintaining employment. The Employed Individuals with Disabilities Program (EID) Program, administered by the Maryland Department of Health (MDH), provides Medical Assistance (also called Medicaid) to working Marylanders with disabilities who meet a few conditions. For the most up to date information however on the Employed Individuals with Disabilities Program (EID) click HERE.  

Tell us a little bit about yourself and your position at The Coordinating Center?  
As Program Director for the CCS Program, I am responsible for program development and execution, quality oversight, training, and compliance. I work closely with the DDA in Central, Eastern, and Southern Maryland and the DDA’s regional office, to ensure the individuals we serve, and their families have access to critical resources and Medicaid Waiver services that encourage self-sufficiency, health and safety and real community participation. I have been with The Coordinating Center for 10 years and bring extensive experience in behavioral health and home and community-based services. I’ve served as a Crisis Counselor, Mental Health Counselor, Care Manager and Supports Planner, helping people with behavioral and mental health conditions, complex medical needs and those with intellectual and developmental disabilities achieve their aspirations for a meaningful life. 

Conclusion
National Disability Employment Awareness Month (NDEAM) serves as a reminder of the progress we’ve made in promoting disability inclusion in the workforce and the work that still lies ahead. Coordinators of Community Services are instrumental in this journey, providing essential guidance and support to individuals with disabilities as they pursue meaningful employment. 

September is National Sickle Cell Awareness Month, designated by Congress to help focus attention on the need for research and treatment of sickle cell disease. We recently sat down with Karen Twigg, Vice President, Population Health, Community Health at The Coordinating Center and Dr. Jason Fixler, attending physician in the Pediatric Hematology/Oncology Program at the Herman and Walter Samuelson Children’s Hospital at Sinai, a part of the LifeBridge Health System, to learn more about sickle cell disease.

What is Sickle Cell Disease?
Advocacy for people with complex medical needs and disabilities is at the core of The Coordinating Center’s mission. It is inherently important for us to increase community awareness of diseases and disorders that are often not given media attention. This is especially true in September, which is Sickle Cell Disease (SCD) month, as it gives us an opportunity to shine a light on a disease that is often pushed into the shadows. According to the National Health Institute (NIH), SCD affects more than 100,000 people in the United States and 20 million people worldwide… and most of those with SCD are of African-descent.

SCD is a group of red blood cell disorders affecting hemoglobin, the protein in your body that carries oxygen to your cells, which can cause symptoms ranging from fatigue to severe pain. People suffering from SCD are born with the disorder (inherited) but usually do not show symptoms until they are about nine to twelve months old. Individuals with SCD have red blood cells that are rigid and sickle-shaped, like a crescent moon, rather than being flexible and disc-shaped, like a full moon. A round shape allows red blood cells to move easily through blood vessels, while a sickle shape causes the red blood cells to stick to each other causing clumping that can block the blood flow through the body. Read more>>

What treatments are available for SCD?
The standard treatments for SCD include medications that prevent red blood cell sickling, pain crises, and other severe complications. For a disease that affects so many people, there are relatively few disease-specific medications available to treat or prevent SCD’s impact on the body. However, there are diagnostic tests that can be used to help with the management of SCD. As previously noted, SCD can impact blood flow to the body’s organs – including the brain. Transcranial doppler (TCD) ultrasound is one example of an important diagnostic test that can be used to avoid one of the most severe complications of SCD. TCD is used to predict the risk of stroke in children and adolescents with SCD. This simple, 15-minute, non-invasive test, which measures the speed of an individual’s blood flow in their brain, can preserve a child’s quality of living – or save their life.

Although there have been many recent breakthroughs in medications and cures for sickle cell disease, this has all happened in the past 10-20 years. Historically, research into the development of new treatments for this disease has been grossly underfunded, as other diseases have caught the media’s attention and led to their being the focus of funding and fundraising. Some of the newer therapies to treat SCD include gene editing and the use of a chemotherapy medication (agent), Hydroxyurea. This agent has been the most successful addition to the battle against SCD and has been used for over 30 years. Although there have been newer medications recently introduced to treat SCD, they have had limited ability to change the course of the disease.

Interview with Dr. Jason Fixler:
According to Dr. Jason Fixler, attending physician in the Pediatric Hematology/Oncology Program at the Herman and Walter Samuelson Children’s Hospital at Sinai, gene editing is the most exciting innovation to affect SCD. He explained the process of gene editing:

“We take out the patients’ stem cells and then either insert the normal hemoglobin beta gene or make the cells produce more hemoglobin F (fetal hemoglobin). Both result in eliminating sickling and the complications of sickle cell disease such as pain, stroke, and acute chest syndrome, which is sickling in the lungs that can result in respiratory distress or even death.” This mode of treatment is still in the experimental stage.

One of the most significant challenges that an individual with SCD and their family may face is the management of a sickle crisis. Developing a crisis management plan with a medical provider knowledgeable about SCD is essential to proactively managing a sickle cell crisis – especially a pain crisis. Communication of the crisis management plan to hospitals and emergency room staff can help people with SCD avoid the mislabeling of a pain crisis as an addictive or behavioral health issue. As a pediatric hematologist for over twenty years, Dr. Fixler has had many opportunities to teach residents about the numerous challenges revolving around the management of SCD. He shared that “many residents and medical personal have the most issues surrounding acute pain crisis and narcotic use.” Dr. Fixler used a patient story to describe and explain these issues.

“A 12-year-old male with SCD was admitted to my floor for the treatment of pain crisis. He had severe pain in his back and legs which was not controlled with oral pain medications at home. He was placed on a patient controlled analgesia pump (PCA) that gave him morphine as needed and Toradol (intravenous medication similar to ibuprofen) to control his pain during his hospitalization. On day three of his hospital stay my residents approached me because they felt he was faking his pain and was ‘drug seeking’. When I asked why they felt this way, their response was he is playing his video games and having fun so therefore he cannot be in that much pain and should be discharged home. I turned this into a teaching moment that those residents will always remember.”

Dr. Fixler went on to say “I brought the residents into the patient’s room and began asking the patient several questions revolving around his pain:

• Dr. Fixler: Where is your pain?
  Patient: Back and legs still.
• Dr. Fixler: Has it improved over the past day?
  Patient: Yes
• Dr. Fixler: Are the narcotics helping the pain?
  Patient: Yes
• Dr. Fixler: What else, besides the narcotics, helps with the pain?
  Patient: Taking my mind off the pain.
• Dr. Fixler: Can you explain what you mean?
  Patient: Well, when I talk to my friends and family I am not thinking about the pain and I feel better. Also, when I watch a good movie, I lose track of the pain while I am watching it.
• Dr. Fixler: What else besides talking on the phone and watching TV helps your pain?
  Patient: I love playing video games at home with my friends. When I am in the hospital, I can still play with them which is really cool. Sometimes I am having so much fun I may even laugh.
• Dr. Fixler: So, while you are laughing and playing video games is your pain gone?
  Patient: No, I just get sidetracked and it feels better. It is still there, but kind of in the background. I hate hitting the pain button because the medications make me feel weird and sleepy. The video games take my mind off the pain and I notice I hit the pain button less often.”

Dr. Fixler led the residents out of the patient’s room and went to another room to discuss this interaction. He stated that this was their “AHA! moment when they realized that, just because someone is having fun playing video games or on the phone laughing, it doesn’t mean their sickle cell pain is gone.” People suffering with SCD are using these activities to help decrease their focus on their pain and to possibly help decrease the amount of pain medication they need. Dr. Fixler went on to say that “we shouldn’t punish our patients for trying out activities that may help them manage their pain” – we should listen and support them, not make assumptions and judgements.

In Conclusion:
So, as we recognize sickle cell disease (SCD) in the month of September, we hope that the information in this blog provides many people with their AHA! moment about the struggles and challenges people suffering from SCD face on a daily basis. Dr. Fixler’s hope is that more attention will be paid to the funding of research and the development of new treatments and cures. We are optimistic that, with increased awareness and knowledge… and media attention, SCD can step out of the shadows and have its moment in the spotlight.

By: Renée Dain, SVP, Strategic Partnerships and External Affairs

At The Coordinating Center, we understand the importance of comprehensive care and support for individuals and families. This month, as we celebrate the convergence of National Immunization Awareness Month, Children’s Vision and Learning Awareness, and National Back to School Month, we’d like to highlight how our dedicated Care Coordinators can play a vital role in ensuring you and your loved one’s well-being. In this blog post we will explore how our Care Coordinators can provide valuable assistance and support to promote your family’s health and wellness. Let’s dive in and discover the benefits of having a caring ally by your side.

• National Immunization Awareness Month highlights the importance of vaccinations in preventing and controlling infectious diseases. Vaccines are crucial for safeguarding children’s health and preventing the spread of dangerous illnesses. Care Coordinators work closely with healthcare professionals to ensure that you and your family are up to date with immunizations, helping to protect you from vaccine-preventable diseases while promoting overall community health. Click HERE for the American Academy of Pediatrics Child and Adolescent Immunization Schedule by Age and HERE for the Centers for Disease Control and Prevention’s Adult Immunization Schedule by Age.
• Children’s Vision and Learning Awareness Month focuses on the crucial connection between vision and learning. Clear and accurate vision is fundamental for children’s academic progress and overall development. Unfortunately, vision problems often go unnoticed, hindering a child’s ability to learn and comprehend. Care Coordinators can assist in coordinating comprehensive eye examinations, ensuring that any vision issues are identified early on. By promoting regular eye examinations, recognizing the signs of vision problems, and creating eye-friendly environments, we can support children in achieving their full potential.
• National Back to School Month signifies the exciting time when students, parents, and educators prepare for a new academic year. It’s a time for fresh beginnings, setting goals, and embracing the joy of learning. This month-long celebration encourages families and communities to support students as they embark on their educational journey. Care Coordinators can provide valuable support to make the transition back to school seamless and successful. They can help families navigate the educational system, attend IEP meetings, and access resources to support specific needs. They are there to listen, offer guidance, and empower you to advocate for your child’s academic and emotional well-being.

Benefits of Having a Care Coordinator at The Coordinating Center include:

• Personalized Support: Our Care Coordinators work closely with you to understand your unique needs, providing personalized support tailored to your preferences.
• Expert Guidance: Our Care Coordinators possess extensive knowledge and expertise in navigating healthcare, education, and community systems. They can provide valuable guidance and connect you with relevant resources.
• Holistic Approach: Our Care Coordinators take a holistic approach, recognizing the interconnectedness of physical health, vision, and education. They can help address the multiple dimensions of well-being.
• Advocacy and Empowerment: Our Care Coordinators are dedicated advocates, ensuring that you have the information, resources, and support to make informed decisions and advocate for your own or your child’s needs.

Conclusion:
As we celebrate National Immunization Awareness Month, Children’s Vision and Learning Awareness, and National Back to School Month, our Care Coordinators stand ready to provide essential support, guidance, and advocacy for you and your family. Whether it’s promoting immunizations, nurturing clear vision, or facilitating a smooth back-to-school transition, our Care Coordinators are committed to your overall well-being. Reach out to us and discover the difference a caring ally can make during these important awareness campaigns. Together, we can ensure your health, happiness, and success.

By: Renée Dain, SVP, Strategic Partnerships & External Affairs 

July is National Social Wellness Month—a time to reflect on the profound impact of social interaction and its transformative effects on our lives. This annual observance serves as a gentle reminder to prioritize our social well-being and dedicate valuable time to nurturing the relationships we already cherish, while also welcoming the prospect of new connections on the horizon. 

Social wellness means nurturing yourself and your relationships. In the pursuit of a fulfilling life, social wellness plays a pivotal role in nourishing both ourselves and our connections with others. The impact of social support on our quality of life cannot be overstated. It acts as a protective shield against the adversities that life may throw our way.  

Social support manifests in various forms, each of which contributes to our overall sense of well-being: 

• Emotional – actions taken to make someone else feel cared for and understood, such as lending an empathetic ear and offering kind words of encouragement. 
• Instrumental – physical support, such as financial aid or help with household chores, to help ease the burdens of daily life and enable others to focus on their wellbeing. 
• Informational – offering guidance, sharing knowledge and imparting valuable insights. 

People who cultivate healthy relationships and possess strong support systems experience an enhanced overall mood, effectively manage stress, and increase self-esteem. Conversely, individuals who experience social isolation face an increased likelihood of developing chronic diseases and enduring illnesses. 

In today’s fast-paced and interconnected world, social well-being has emerged as a crucial factor in promoting a positive work environment. By fostering a sense of belonging in the workplace, organizations can unlock a myriad of benefits that extend beyond individual happiness. From increased productivity to heightened engagement, social well-being paves the way for long-term success both for the workplace and its employees. 

We recently sat down with Erica Bostwick, SHRM-CP, AVP, Human Resources at The Coordinating Center to learn more about social wellness or social well-being in the workplace. 

Why is Social Well-Being important in the workplace? 

Social well-being directly correlates with improved productivity. When employees feel a genuine connection with their coworkers and supervisors, collaboration becomes seamless. When they feel valued, included, and connected to their organization, they are more likely to invest themselves wholeheartedly in their roles and are driven to go above and beyond their responsibilities.  

How is The Coordinating Center contributing to social well-being in the workplace?                               

Here at The Coordinating Center, we have created a culture where coworkers can get to know each other outside of their daily work tasks. We have a collaborative governance structure, where coworkers can join committees and councils that foster community, collaboration and impact. These opportunities are vast, ranging from our Family Resource Fund Committee, where financial needs of clients are discussed and allocations are made to improve their quality of life or fulfil a critical need, to our Fundraising Committee which brings in money for the Family Resource Fund and our Wellness and Recognition Committee, which works hard to create an environment that values and supports coworker engagement and promotes a healthy organization.  

We also hold events including team-building activities, where teams go on outings such as picnics, escape rooms and bowling and volunteer activities. Our #TCCInAction program is designed to encourage coworkers to volunteer in the community with their teams, across teams and with other coworkers. 

We also encourage open communication and collaboration among team members, creating a sense of teamwork and shared purpose. This is a vital part of our culture, which is driven by our investment in Diversity, Equity, Inclusion and Belonging. We have a DEI&B Coordinator who works in our HR Department, who works alongside our DEI&B Committees (coworker and board led) to embed DEI&B philosophy and practices in everything we do at The Center. 

Other ways we invest in coworker wellbeing is by supporting their physical, mental, financial and professional wellbeing. (CLICK HERE to learn more). 

How can companies cultivate social well-being in the workplace? 

Maintaining a sense of social well-being requires dedicated effort in nurturing and prioritizing your relationships within the workplace. Building and sustaining long-term connections with colleagues and employees is crucial for your overall wellness. Here are some essential steps you can take to foster healthy and positive relationships while honing your assertiveness skills: 

1. Foster meaningful connections 
2. Embrace assertiveness 
3. Establish healthy boundaries 
4. Cultivate Mutual Trust and Respect 
5. Practice active listening and empathy 
6. Stand by your coworkers in times of crisis 
7. Recognize and appreciate success 
8. Deliver constructive critique with care 
9. Cultivate genuine happiness for others 
10. Engage in shared activities 
11. Cultivate empathy 
12. Maintain a professional-personal balance 

By prioritizing your social wellness and actively nurturing your workplace relationships, you not only enhance your own sense of belonging but also create a positive impact on those around you. Healthy and fulfilling connections at work contribute to a thriving and supportive environment for everyone involved. 

Can you tell us a little bit about yourself and what you love about working at The Coordinating Center? 

I have over 16 years of experience in the field of human resources, working with diverse industries such as Financial Services, Construction, Architectural, Engineering, Interior Design, Staffing Agencies, and other Consulting businesses. As a certified Diversity and Compliance Specialist, I have developed a strong skill set in designing and implementing effective Diversity, Equity, Inclusion, and Accountability programs. I am deeply committed to fostering ethical, inclusive, and accountable practices within the workplace. My expertise also extends to Equal Employment Opportunities and Affirmative Action Plans, ensuring compliance with regulations and promoting best practices. 

One of the most rewarding and truly unique things about The Coordinating Center is our commitment to making sure that not only do we focus on Diversity, Equity and Inclusion, but we also include belonging. Since my time at this company, I have not only felt a sense of belonging but also that my thoughts, ideas and contributions are valued here.  I have truly enjoyed the ability to utilize my skills and expertise combined with my passion for helping people to do something that is making a difference in the lives of so many people. 

In my current role as AVP, Human Resources at The Coordinating Center, I am responsible for crafting and executing the organization’s HR strategy to align with our overall business plan and strategic direction. My primary objective is to ensure excellence in delivering HR programs and services, contributing to the organization’s overall success. 

 

 

June is Children’s Awareness Month
By: Renée Dain, SVP, Strategic Partnerships & External Affairs

Did you know that the word ‘June’ relates to ‘children?’ It is derived from the Latin word ‘Ju-Ven-Is’ which translates to ‘youth.’ This is why the month of June was chosen for Children’s Awareness Month. Children’s Awareness Month, which was initially founded in the loving memory of all the children who have died violent deaths in America. Over time it has evolved into something bigger. Children’s Awareness Month has become a time to spend nurturing and cultivating the joys and treasures of childhood. This month focuses on awareness of ways to encourage, support, and educate children, while prioritizing their health and well-being.

Nearly 51% of the people The Coordinating Center serves are children and youth with special health care needs. Our focus is on helping children and youth access the medical and community-based services they need to excel and feel a sense of normalcy and belonging.

We recently sat down with Fay Alexander, Team Manager for VIPhysicians&Kids, to learn more about the ways in which VIPhysicians&Kids is helping children and youth excel.

What is VIPhysicians&Kids?

VIPhysicians&Kids is a patient-centered medical home program for children and youth with special health care needs, one of several programs at The Coordinating Center that supports this population. We recognize that providing effective care coordination can be challenging and complex, especially for children and youth with special health care needs who receive care from numerous providers and systems. That is why VIPhysicians&Kids partners with pediatric practices, the child/youth, and their family to deliver a collaborative self-management, care coordination model. Participants can expect our experienced team to help them address barriers in care, develop a shared care plan and find resources that best fit their family’s needs.

What qualifies as a special health care need?

Children and youth with special health care needs are those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally. CYSHCN can have a wide range of conditions and diagnosis, such as autism spectrum disorder, mental and behavioral health needs, sickle cell disease, spina bifida, traumatic brain injury, fetal alcohol spectrum disorder, cystic fibrosis, diabetes, and other conditions.

What types of services are offered?

VIPhysicians&Kids puts participants at the center of their care, working with their health care team to create a personalized plan to reach their goals. Our team collaborates with providers and participants to close gaps in care and address social determinants of health. We offer a one-stop shop for medical and non-medical resources and services and we provide person- and family-centered care coordination services. The VIPhysicians&Kids team can support discharge planning from hospital-to-home, school transitions and transitions to adult services.

How does VIPhysicians&Kids support children and youth with special care needs in building confidence, pride, and self-esteem?

One of the things that we excel in is helping children and youth who are approaching the age when they prepare for the transition from adolescence to adulthood. We work with the youth and the family to prepare them for the adult approach to health care and other adult services. We teach them about the importance of self-care and self-advocacy. Knowing their health and health care situation and needs, the medications they take, how to speak with their doctor about their medical needs and how to talk to their health insurance company are just a few examples of what we teach. We also offer participants a quarterly newsletter that focuses on advocacy and have created trainings for this as well.

What are some additional resources for transitioning youth?

Great question! We recently developed the Milestone Checklist in partnership with families and The Coordinating Center’s Transitioning Youth Committee, which is comprised of care coordinators with expertise in transition services for Children and Youth with Special Health Care Needs, (CYSHCN) across all The Coordinating Center’s programs. This Checklist is a guide for navigating the path from birth through life after high school for children and youth with special health care needs. It’s available on our website (Click HERE for Milestone Checklist).

Can you tell us a little bit about yourself and what you love about working at The Coordinating Center?

I am the team manager and a certified community health worker for the VIPhysicians&Kids program. I’ve been with The Coordinating Center since October 2016 and with the VIPhysicians&Kids program since July 2020.

What do I love about working at the Coordinating Center? I am afforded the opportunity to work with a team and for an organization that truly cares about the clients and families we serve. Through the VIPhysicians&Kids program, I am able to come alongside families who are trying to navigate services for their CYSHCN. Each family has their own unique story, journey, and needs, and I love being able to support the families and be part of their support network. Getting to see the families and clients grow in their advocacy skills is also another amazing aspect of this role.

May Is Mental Health Month!
By: Renée Dain, SVP, Strategic Partnerships & External Affairs

Since 1949, Mental Health America (MHA), its affiliates, and countless others have observed May as Mental Health Month by reaching out to millions of people to spread the word that mental health is something everyone should care about. MHA’s 2023 Mental Health Month Campaign Look Around, Look Within, is focused on how surroundings impact mental health.

Where a person is born, lives, learns, works, plays, and gathers, as well as their economic stability and social connections, are part of what is called “social determinants of health” (SDOH). The more these factors work in your favor means you are more likely to have better mental well-being. However, when it seems like the world is working against you, your mental health can suffer.

For many people, not having a true “home base” to consistently return to can leave them feeling distressed, disconnected, or isolated. Stable housing allows individuals to develop routines and connections to their local community, which are beneficial for mental health. Having safe, stable, and healthy home conditions set the foundation for achieving and maintaining good mental health.

Here at The Coordinating Center, we work with individuals and families to address SDOH, by connecting them to services and supports, such as affordable and accessible housing, food, employment, school, medical care and behavioral health services. Our Program Director, Community First Programs, Megan Bazzett, MS, CPRP, CFRP has over 23 years of experience working in behavioral health settings. We recently sat down with her to learn more about home and community-based services and the steps we can take to change their surroundings in favor of their well-being, and suggestions for how to cope if change isn’t realistic.

 What are Home and Community-Based Services Programs/Waivers and who is eligible for services? 

Home and Community-Based Services (HCBS) are offered through Maryland Medicaid to older adults, individuals with disabilities, and children with chronic illnesses. In addition, waiver programs exist with different eligibility requirements to allow for expanded financial coverage.

HCBS programs offer support to qualifying individuals that support the desire to live at home or in an assisted living facility. Services are combined in a variety of ways to meet the unique needs of each participant, and target such areas as personal care, safety and mobility within the home, nutrition/dietary needs, management of benefits, and connection to resources.

What percentage of the people enrolled in HCBS have a mental health or behavioral health need and how does your team support them? 

This is almost certainly a fluid number, as there are individuals whose behavioral health needs have not been formally identified. Some individuals face mental health challenges across multiple life stages, while others experience symptoms that manifest concurrent to a significant change. As an employer, The Coordinating Center supports the overall wellness of its team members in many ways. In turn, coworkers at The Center demonstrate this type of support for the clients we serve, as well as for one another. Our team offers linkage to mental health resources such as peer support, therapy, medication management, and crisis services to name a few.

What are the biggest gaps in care for this population? 

The work force shortage of Direct Service Professionals (DSP’s) is a significant contributor to gaps in care. Based on estimates from The Centers for Medicare & Medicaid Services, the shortage is expected to continue through 2030 with an increasing demand that is not being matched by a workforce that remains stable in numbers. Longer wait times to begin services and higher rates of staff turnover are just two of the potentially negative impacts on the quality of care.

What are the top four services that Supports Planners help individuals locate and access? 

Supports Planners most often assist individuals with accessing Personal Care Attendant Services, Home Modifications, Home Delivered Meals, and Medical Assistance Coverage/Maintenance.

What are some steps people can take to support themselves or a loved one with a mental health or behavioral health need. 

Mental Health America recently put together a mental health challenge. MHA suggests we take a moment to consider our surroundings and ask ourselves the following questions: Do I feel safe? Do I have access to health care and grocery stores? Does my home support me, both physically and mentally? This Mental Health Month, challenge yourself to look at your world and how different factors can affect your mental health. While many parts of your environment can be out of your control, there are steps you can take to change your space and protect your well-being. MHA suggests the following:

• Work toward securing safe and stable housing: This can be challenging due to finances, age, and other reasons, but there are a few things you can try, such as reaching out to state/local agencies to secure housing, removing safety hazards in the home, or finding another space (such as a community center or friend’s home) where you can get the comfort you are missing at home.
• Focus on your home: Consider keeping your space tidy, sleep-friendly, and well-ventilated. Surround yourself with items that help you feel calm and positive.
• Create bonds with your neighborhood and community: Get to know the people living around you, join or start neighbors helping neighbors’ groups, and support local businesses to challenge gentrification.
• Connect with nature: Hike in a forest, sit in a city park, bring a plant inside, or keep the shades open to absorb natural light.

If you’re taking steps to improve your surroundings but are still struggling with your mental health, you may be experiencing signs of a mental health condition. Take a free, private screening at mhascreening.org to help you figure out what is going on and determine next steps. Go to mhanational.org/may to learn more.

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

As Director, Community First Programs I provide oversight of The Center’s supports planning services for more than 3,000 Marylanders statewide, enrolled in one of Maryland Medicaid’s Home and Community-Based Services Programs (HCBS).

Prior to The Coordinating Center, I served as Chief of Operations for a multi-jurisdiction community-based mental health provider offering comprehensive services to individuals across the lifespan. I have 23 years of experience in behavioral healthcare and program management and have held leadership roles through two nonprofit behavioral health organizations, serving as the Director, Community Outreach Programs and the Director, Psychiatric Rehabilitation Programs. I received my master’s degree in psychology from Walden University and certifications granted by the Psychiatric Rehabilitation Association (PRA), formerly USPRA: Child and Family Resiliency Practitioner (CFRP,) and Certified Psychiatric Rehabilitation Practitioner (CPRP).

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

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.”

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!”

 

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.