Category: Blog

The Lifespan Down Syndrome Program at UAB Medicine is a groundbreaking initiative designed to deliver comprehensive, personalized care for individuals with Down syndrome at every stage of life. The program aims to improve the quality of life for both children and adults with Down syndrome by offering lifelong, research-backed medical care and support.

The Lifespan Down Syndrome Program provides holistic care that addresses a wide range of medical, developmental, and social needs. By integrating multiple specialists and resources, the program manages both immediate health concerns and long-term care goals. This comprehensive approach helps individuals with Down syndrome achieve their best possible health and well-being. Whether navigating early childhood development or managing health care needs in adulthood, UAB’s Lifespan Down Syndrome Program offers guidance and support at every stage, ensuring no patient or family feels alone on their journey. The program operates as a collaborative care model, working alongside the patient’s community doctor rather than replacing them. This partnership ensures that individuals with Down syndrome receive optimal care, following established guidelines and best practices for their health and development.

Faculty, staff, and trainees from the Center for Excellence in Developmental Disabilities are involved as clinicians and as steering committee members for this new program.

A Family’s Perspective
“Navigating [our daughter]’s transition into this critical stage of her life was overwhelming at times, but meeting with the interdisciplinary team at the new lifespan program for individuals with Down syndrome brought such relief,” shares the family of one of the clinic’s first patients. “From the therapists and social workers to physicians, each team member provided invaluable resources and referrals to specialists that put our minds at ease. What really stood out was how they kept [our daughter] at the center of every decision, ensuring her voice and needs guided the entire process.”

A Lifelong Commitment to Care
The Lifespan Down Syndrome Program supports individuals from infancy through adulthood.

• • For younger patients: Services are provided at the UAB Civitan-Sparks Clinics, where an expert team collaborates to meet the diverse needs of children with Down syndrome. Beginning at age 14, patient visits will focus on transition readiness, emphasizing the development of autonomy and independence to prepare for adulthood.
  • For adult patients: Starting at age 18, individuals will be seen at the Staging Transition for Every Patient (STEP) Clinic, part of UAB Medicine’s broader efforts to support patients with complex care needs as they enter the adult healthcare system.

Promoting Inclusivity and Community Support
Beyond medical care, the Lifespan Down Syndrome Program creates a supportive, inclusive environment for individuals with Down syndrome, their families, and caregivers. UAB Medicine connects families with essential community resources, advocacy organizations, and support groups to foster a more inclusive society. This approach not only addresses healthcare needs but also emphasizes social well-being, community engagement, and long-term independence.

“Down Syndrome Alabama is thrilled to have the new lifespan clinic in our state to better serve the Down syndrome community,” says Missy Haughery, Executive Director of DSA. “There is still much medical mystery surrounding the extra 21st chromosome, and having a specialty clinic within our state is an incredible advancement for families seeking expert care.”

A Brighter Future for Individuals with Down Syndrome
At UAB Medicine, we believe everyone deserves the highest quality of care. Our Lifespan Down Syndrome Program is committed to helping individuals with Down syndrome live fulfilling, healthy lives at every age. Join us in celebrating this important step forward in care for individuals with Down syndrome as we work together to create a brighter, more inclusive future.

How to Request an Appointment
If you or someone you know could benefit from the Lifespan Down Syndrome Program, please use the following links:

Patients 0-18      Patients 18+

For additional questions or support, please reach out via email to DSsupport@uabmc.edu or call 205-975-6800.

The inaugural Governor’s Disability Policy Summit was held on June 18 at the Lakeshore Foundation in Birmingham. Aimed at addressing and advancing key issues impacting the disability community, the event was filled with insightful discussions, networking opportunities, and strategic advocacy. By bringing together decision makers, advocates, and individuals with disabilities, the goal to drive positive change and shape a more inclusive future in Alabama seems near.

This consumer-driven day of advocacy, discussion, and information aimed to empower participants and drive positive change in disability policies including six critical areas, each essential to improving the lives of disabled Alabamians:

1. Employment
2. Health Care
3. Transportation
4. Education
5. Housing
6. Civic Engagement

Christopher Alvarez, M.S., a bilingual disability activist and freelance journalist for The New York Times and Contributing Writer for NBC Latino, delivered the keynote address. Alvarez shared his insights on navigating education, employment, and housing systems while advocating for essential services. His address provided a valuable first-hand perspective and inspired attendees to take action in our own state.

Partners in Policymaking Alabama participants and alumni attended the event to contribute to the conversation. June Wilson, 2024 PIPA cohort, took the opportunity to spread awareness for her leadership project, “Changing Spaces Alabama.” The Changing Spaces Campaign is a network of advocates bringing awareness to the need for Adjustable-Height Universal Changing Tables in public family restrooms. As part of her Partners in Policymaking Alabama project, Wilson has started a chapter within our state.

When asked why she attended the summit, June quoted legendary disability rights activist Judy Heumann, “Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can.”

The Disability Policy Seminar was sponsored by the Lakeshore Foundation, the Governor’s Office on Disability, and Disability Rights and Resources. UCEDD and PIPA are looking forward to collaborating with this event for next year!

The CEDD and the UAB Civitan-Sparks Clinics (Department of Pediatrics, Division of Developmental-Behavioral Pediatrics) were co-sponsors for the 23^rd Annual Alabama Autism Conference on 2/22 and 2/23/2024 in Tuscaloosa, Alabama. The conference had about 350 in-person and over 200 virtual attendees, including many trainees and faculty/staff from our CEDD programs. Highlights included:

• • Presentations by leading experts, including Susan White, Ph.D.; Brittany Travers, Ph.D.; Jessica Kramer, Ph.D., OTR/L; Lauren Little, Ph.D., OTR/L, FAOTA; Mallory Manning, M.S., CCC-SLP; Pamela Ramsey, M.C.D., CCC-SLP; and Dr. Kerry Magro
  • Four posters presented by trainees from the Autism Database Group at Civitan-Sparks Clinics
  • A trainee breakout session attended by 30 trainees to meet with state department representatives and discuss opportunities for professionals working in the area of autism and related disabilities in Alabama
  • A pre-conference dinner discussion facilitated by LEND/UCEDD faculty Dr. Sarah Ryan, Looking to the Future with Adults with Autism in Alabama
  • Two well-attended pre-conference workshops led by LEND/UCEDD faculty Dr. Justin Schwartz (Empowering Autism Identification and Diagnosis in Primary Care) and Dr. Sarah Ryan (Adapting Evidence-Based Psychotherapy for Autistic Individuals)

The Alabama Autism Conference is held annually on the last Friday in February. More information can be found at https://training.ua.edu/autism/.

Phillip Crain, MPA has joined the CEDD as our first Self-Advocacy faculty member for the UCEDD and LEND at UAB. He is also the Project Manager for Achieving Health Equity for Alabamians with Disabilities (AHEAD), a collaboration between the UCEDD and the Alabama Council for Developmental Disabilities. Phillip recently shared the following information about himself with the CEDD faculty, staff, and trainees.

How did you end up at UAB CEDD? I worked with Auburn University’s Wheelchair Basketball program from 2017 to 2019. When the pandemic started and higher education hiring froze, I decided to go back to school for another degree and a career shift. As a result, I started the MPA program at Troy University with a strong focus on their public health offerings through their graduate certificate in public health administration. This allowed me to explore the inequities of the disabled community regarding society at large and write multiple papers on disability and access to healthcare. At the end of my degree, I did an internship with United Ability. My time at United Ability led me to the STEP program at UAB where I worked for a year. The positions at United Ability and the STEP program allowed me to bolster my knowledge of the healthcare system and issues that disabled people deal with. Those positions also allowed me the opportunity to advocate and educate on behalf of my disabled community and help healthcare professionals better understand the issues facing disabled people, which I love doing. As my time with STEP ended, I was connected with Dr. Schwartz and the AHEAD initiative and here we are.

Where did you grow up? I grew up here in Birmingham. I graduated from Spain Park High School in 2010 before attending Auburn University for two degrees (undergraduate and my first masters) and Troy University to earn my second masters.

What do you like to do in your spare time? My favorite ways to spend time away from work include watching sports, especially the Auburn Tigers and Atlanta Braves, reading, and spending time with friends and family. I also love to travel. My favorite sights are museums, presidential libraries, and historic locations.

Top Bucket List Item? Right now, the top item is to travel to Alaska. Through family vacations, I have been to 49 of the 50 states, and Alaska is the only one I have not been to. Several European countries are also on the list, but the general lack of accessibility is a hold-up.

What are you most looking forward to in your role as a self-advocate faculty at UAB?
Honestly, I see my positions with LEND, UCEDD, and AHEAD as parallels working toward a similar goal. Our goal with AHEAD is to improve access and accessibility in the healthcare space for disabled individuals. We are trying to create an attitudinal shift among providers so
that access and accessibility are at the forefront of their care model. Similarly, my aim for the self-advocate position is to bring awareness where necessary and provide the perspective of a disabled individual within a discussion either by providing my thoughts and experiences or amplifying those of other disabled people. Within the disability space, parents and providers often drown out the disabled voices. We all need a spot at the table as we all have different angles and lenses through which we come to our understanding. The reality is that our view is often too narrow to identify the undesirable aspects and consequences at the periphery of our perspective on a given topic, policy, or practice. We need everyone’s input to see the whole picture clearly.