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Federal grant supports LEND, a program based at KU Medical Center and focused on educating people about autism and developmental disabilities

Thanks to a $3 million grant, the Kansas Leadership Education in Neurodevelopmental and related Disabilities program continues its five-decade mission of training, research and leadership development.

Family of six pose toward camera
Rahel Kebede (second from right) trained with Kansas LEND to better care and advocate for her son, Caleb, 18 (third from right). Her additional family members include (from left to right) Nahum, 16; father Natenael Negash; Eden, 10; and Lydia, 13. Photo contributed by Rahel Kebede.

Rahel Kebede became a mother after the birth of her son, but she became a mother on a mission after working with the LEND program.

“LEND has changed my life, and the life of my family, in a big way,” Kebede said.

LEND is the Leadership Education in Neurodevelopmental and related Disabilities, a program that aims to improve the lives of individuals on the autism spectrum and those with developmental disabilities. The Kansas LEND program, which is based at the University of Kansas Medical Center, is one of 60 such programs nationwide.

In 2021, Kansas LEND received a new five-year grant for more than $3.1 million, or $623,000 a year, from the Maternal and Child Health Bureau. The bureau is part of the federal Health Resources and Services Administration. Though Kansas LEND has received governmental funding for more than 50 years, more recent allocations have come from legislation passed by the U.S. Congress in 2014. The legislation, also known as the Autism CARES Act, funds autism research, education and support services.

“Having the Autism CARES Act, and having the LEND program be part of that, has allowed us to train more people to improve the health and well-being of individuals with autism and other developmental disabilities,” said Rene Jamison, Ph.D., associate professor of pediatrics in the University of Kansas School of Medicine and director of Kansas LEND.

Sydney Walls delivers a presentation from a podium
Sydney Walls was a long-term trainee with the Kansas
LEND program when she presented her capstone project
in May 2022. Walls graduated with a master’s degree in
public health and currently works as a research assistant
for Kansas LEND.

Training medical professionals

A big part of the grant focuses on educating people about autism and neurodevelopmental disabilities. Medical students, residents or fellows can sign up for a week-long rotation with Kansas LEND, work with a mentor on an autism-related research project or spend a clinical rotation getting additional training.

The funds also support continuing education for veteran doctors and other health care professionals. “There’s little content around disability within health care curricula, so there’s a need for additional training for students and practicing professionals to feel prepared and provide adequate care,” Jamison said.

Training for everyone

Training is not limited to health care professionals, however. Other professions, from city planners to speech pathologists, are invited to learn about autism and developmental disabilities and apply that knowledge to their work. Autistic and developmentally disabled individuals can join and learn to advocate for themselves (identified as self-advocates), and family members are also encouraged to seek training with Kansas LEND.

That’s how Kebede joined an in-depth, 300-hour training called the long-term trainee cohort. Through weekly meetings, small-group get-togethers, special presentations and homework assignments, Kebede learned how to be a better advocate for Caleb, her 18-year-old son with autism and Duchenne muscular dystrophy.

One mother’s experience

“I had no knowledge or understanding of how the system works, the services that are available. I just tried to figure things out, day to day,” she said.

Through the LEND cohort, Kebede discovered new information about autism. She also found helpful resources and established a social support system that helped her realize she wasn’t alone in her challenges.

“Before LEND, I did not have the confidence to say things, to have the confidence to speak up. I used to think, ‘I’m just a mom — my experience doesn’t matter.’ But once I went through the program, they helped me see that what I have to say is very valuable,” Kebede said. “I became more vocal because I got the encouragement and support from LEND. They helped me understand this world and how to live in it with a stronger voice.”

For individuals who can’t make a 300-hour commitment but still want training in autism and developmental disabilities, Kansas LEND offers opportunities for continuing education. Jamison said LEND has trained 6,500 people through webinars in the past two years, and the organization is making a special effort to attract child care providers to upcoming webinars.

“We have families whose parents miss work because their children have been kicked out of daycare or are frequently asked to leave early. That affects the whole family,” Jamison said. “These parents need someone who feels capable and competent to take care of their child.”

The ultimate outcome of all this training, Jamison hopes, is to impact systems of care and thus improve the lives of individuals with autism and developmental disabilities. Then they can excel because they’ve had the support they’ve needed along the way.

“We have a heavy emphasis on training,” Jamison said. “With that training, we’re building the capacity of individuals within the community to work effectively with people of all abilities.”

More about Kansas LEND

The Kansas Leadership Education in Neurodevelopmental and related Disabilities program prioritizes training, but the organization also:

  • Provides outreach to rural and underserved areas across Kansas.
  • Addresses mental health conditions that often coexist with autism and developmental disabilities.
  • Connects with a national network of other LEND programs.

Visit LEND

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