CHILD DEVELOPMENT

Miami’s Mailman Center helping change the way society views developmentally disabled children

 

aburch@miamiherald.com

The seeds of the Mailman Center for Child Development were sown on a tennis court during a match more 50 years ago, a conversation between a U.S. president’s sister and the director of a university pediatric department about how best to serve special needs children.

They both knew something about that world: Eunice Kennedy Shriver’s sister, Rosemary, was developmentally disabled and Robert Cooke, a pediatrician and department head at Johns Hopkins University had two severely disabled daughters. At a time when most severely disabled children were referred to as “mentally retarded” and often consigned to institutions, Shriver, her husband Sargent and Cooke believed the best way to change lives was through research and equipping those on the frontlines with the professional training and tools.

That conversation, in early 1963, was a game changer in the way the nation treated its youngest and most needy citizens, the first significant step toward opening 11 academically affiliated clinical and training facilities in the United States, including the University of Miami Miller School of Medicine’s Mailman Center. Shriver was even present when the doors of Miami’s gray, nine-story building opened on the Jackson Memorial Medical Center campus in 1971.

“Our core mission has not changed, in that we are trying to learn and do as much as possible to help our children with disabilities,’’ said Daniel Armstrong, director of the center. “We are trying to help them live full lives and grow into independence.’’

Built upon the premise that “different” is about possibilities rather than limitations, the Mailman Center – the first of its kind in the nation – would become a part of national discourse about the care of special needs children and help shape public health policies. It opened with the assistance of a federal grant, the Kennedy Foundation and Abraham and Joseph Mailman, a pair of South Florida brothers and business executives who gave generously to healthcare and education causes.

Today, the center, operating on a $24 million annual budget, offers services to about 22,000 children a year through its early education programming, clinics and the high-profile inclusion school called the Debbie Institute – named after Abraham Mailman’s granddaughter, Debra Jean Segal, born with cerebral palsy. Over the decades, the focus has broadened to include the developmental risks of neo-natal newborns and children with serious chronic illnesses such as cancer. Currently, there are more than 70 active research projects and a sweeping set of programs ranging from an Early Steps intervention to a Fragile X clinic.

“The folks at the Mailman stand out for their willingness to work with and share information with others across the country and around the world,’’ said Margaret Nygren, CEO of the American Association on Intellectual and Developmental Disabilities, a Washington DC-based membership organization. “They are a national leader in the fields of clinical work, training and research.’’

Natalie Araneda, 21, born in Guatemala City, spent four years at the Debbie Institute learning to live with limited hearing.

“I came here to take a test when I was 1, after my parents realized I was not responding to the sound of their voices,’’ said Araneda, who wears a hearing aid. “There wasn’t really a place for me to go in my country for my level of hearing loss. We ended up moving here for me to be treated.’’

Araneda started at the Debbie Institute in 1996 where she attended inclusion classes that combine children with disabilities and those typically developing. Araneda and her family moved back to Guatemala where she attended high school and she returned to the U.S. three years ago to attend college. Once she graduates from Miami-Dade College, she hopes to open a center similar to the Mailman in her native country.

“I know how hard it was living in Guatemala with a hearing disability, and I also know how the Mailman helped me to live a normal life,’’ said Araneda, who lives with her older brother in Doral. “They helped me to grow and learn and become comfortable with my disability.’’

The center’s holistic approach and inter-disciplinary training has been used as a model: Both the National Institutes of Health and Centers for Disease Control consulted Mailman staff to set up clinical trials and training in Central and South America.

“A good deal of what we do is to help facilitate the transition to adulthood, and making sure that with independence, the patient can participate in their own health and health decisions in a meaningful way, whether are talking about having a conversation with them or communicating with them through an iPad. In that way, our goals are about education and vocation and life skills,’’ Armstrong said in the third floor of his office. “And on the other end of the spectrum, we have learned about the huge difference that early intervention makes in the life of a disabled child. The sooner we can get in and begin treatment and therapies, the better the outcome, which is why this area is such a critical area for development. ’’

In 1985, Mailman researchers launched a landmark clinical study following 1,000 premature, low birth-weight infants through adolescence to determine the impact of pediatric care and family support on developmental delays of at-risk children. The results showed the earlier babies were exposed to treatment, the better the results.

The findings influenced public policies on early intervention and healthcare access and became the basis of Florida’s Early Steps System to make sure early intervention services are available for young children with special needs from birth to age 3.

By the late 1980s, the center had begun experimenting with the inclusion model, in which developmentally disabled children attend classes with “typically developing” peers at the Debbie School. They also developed a model for transitioning children with developmental disabilities into public schools.

“We found that by pairing them [disabled children], with their peers, they were better stimulated, and developed better. And the ‘typically developing’ became more socially aware and compassionate,” said Armstrong, associate chief of staff at Holtz Children’s Hospital.

In 2009, the center expanded its program to include a clinic to treat children with Fragile X, an inherited genetic condition most common in boys, involving changes in part of the X chromosome, which causes intellectual delays.

William Perez, 11, was one of the clinic’s first patients. .

Now a sixth-grader, he was diagnosed with Fragile X before his third birthday. His mother, Rosie, began searching for treatment in South Florida, but found few options.

Dr. Deborah Barbouth, a pediatric geneticist, led the effort to start the South Florida Fragile X Clinic at the Mailman Center, which opened three years ago.

“We were initially concerned because he [William] was in the phase where he had begun to start talking, but he was babbling. And then he stopped talking altogether, so we thought he might have a hearing problem,’’ said Rosie Perez, 41, of Miami. “He was also very, very active and had trouble sleeping. Individually, they didn’t seem like issues. They were all these little indicators of Fragile X, but we had never heard of it.’’

Perez and husband, Manny , have two other children. The youngest, Olivia, 3, also tested positive for Fragile X, though because she is female there is a chance her condition will not be as severe as her brother’s. “The center has been a godsend for us to get quality treatment without leaving our home,” Perez said. “Basically, everything we need we can get in one place. Now, they are like an extension of our family.’’

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