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Today is World Spina Bifida and Hydrocephalus Day

October is National Spina Bifida Awareness Month, and today is World Spina Bifida and Hydrocephalus Day.

According to the National Institute of Neurological Disorders and Stroke, roughly 10 to 20 percent of the general population has spina bifida. Most may not even know that they have it.

As statistics like this suggest, spina bifida is an extremely common condition. So, in honor of World Spina Bifida and Hydrocephalus Day, here are some important facts about spina bifida.

What is spina bifida?

Spina bifida is a type of neural tube defect (NTD) that typically occurs within the first month of a baby’s development. The neural tube forms along the back of an embryo when a specialized plate of cells (the “neural plate”) curls up into a tube. The top of this tube will become the brain and the rest will form the spinal cord.

In spina bifida, this neural tube does not close all the way, often resulting in damage to the spinal cord and nerves. Physical and intellectual effects may vary significantly, depending on the size and location of the opening and whether spinal cord and nerves are affected.

How common is spina bifida?

Spina bifida is the most common neural tube defect in the United States. Every year about 1,500 to 2,000 of the 4 million babies born in the U.S. are affected by spina bifida. The National Institute of Neurological Disorders and Stroke estimates that there are about 166,000 individuals with spina bifida currently living in the United States.

What are the different types of spina bifida?

According to the CDC, the three most common types of spina bifida are myelomeningocele, meningocele, and spina bifida occulta.

Myelomeningocele is the most serious type of spina bifida. This type occurs when the spinal cord and nerves are pushed through the opening in the spinal column. Individuals with this form of spina bifida are often partially or completely paralyzed.

Meningocele is a type of spina bifida in which a sac of fluid is pushed through the opening in the backbone, but this sac does not contain the spinal cord. Individuals with this form of spina bifida experience little to no nerve damage.

The mildest type of spina bifida is spina bifida occulta, or “hidden” spina bifida. In this type, there is no opening or sac on the spine, rather there is just a small gap or malformation. As a result, the spinal cord and nerves are usually unaffected. In fact, many healthy people with spina bifida occulta experience no symptoms at all. An individual with this type may not be diagnosed until late childhood or adulthood, and some people may never learn that they have it.


Hydrocephalus is a separate condition, characterized by the build-up of fluid in the brain. However, these conditions are often grouped together because roughly 70 to 90 percent of individuals with myelomeningocele are also affected by hydrocephalus.

What are the risk factors?

Little is known about what causes spina bifida. Scientists believe that some combination of genetics and environment play a role.

Studies have shown that it is possible to reduce the likelihood of having a baby with spina bifida. Risk factors include certain medical conditions such as diabetes or obesity, some medications, and fevers or extended exposure to heat, such as in a hot tub or sauna.

Folic acid supplements are also recommended to help reduce the risk of spina bifida. Studies have shown that pregnant women who don’t get enough folic acid in their diets are more likely to have babies with spina bifida and other neural tube defects.

Because spina bifida occurs within the first month of a pregnancy – before most women know that they’re pregnant – doctors recommend that all women who might become pregnant take folic acid supplements and manage other risk factors in order to prevent spina bifida.

These preventative measures do not guarantee that a baby will be born without spina bifida, but they do significantly reduce the risks. Although we currently know a lot about spina bifida and how to prevent it, more research is necessary to fully understand the causes and risk factors.


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Down Syndrome Awareness Month

In 1984, President Ronald Reagan signed a resolution declaring October 1984 as “National Down Syndrome Month.” The goal, according to President Reagan’s original resolution, was to raise “public awareness and acceptance of the capabilities of children with Down syndrome” in the hopes that it would “greatly facilitate their being mainstreamed in society.”

Since 1984, regional, national, and international organizations have continued to observe this tradition every October. Here are just a few basic facts about Down syndrome and its history. Click on the hyperlinks for more information and resources.

What is Down syndrome?

Down syndrome is a lifelong condition in which a baby is born with an extra copy of chromosome 21, which affects the development of a baby’s body and brain, causing mild to moderate mental and physical differences.


Little is known about why a baby is born with Down syndrome. One factor that does seem to be significant is the mother’s age. Women who are 35 or older when they become pregnant are more likely to have a baby with Down syndrome. However, 80% of children born with Down syndrome are born to women who are under 35. This is because most pregnancies occur among women who are 35 or younger.

How common is Down syndrome?

According to the CDC, Down syndrome is one of the most common chromosomal conditions diagnosed in the U.S. Roughly 1 in 700 babies born in the United States has Down syndrome.

John Langdon Down

Down syndrome is named for John Langdon Down, a British doctor who first described the condition in 1866. In his original description, Down referred to this condition at “Mongolism,” a term that was accepted until the mid-20th century. However, in the early 1960s, researchers petitioned a medical journal requesting that the name be changed. One of the petition’s signatories recommended naming the condition after John Langdon Down, who not only characterized the condition first but who also fought to change the poor living conditions of people with disabilities at the time. In 1965, this name was adopted by the World Health Organization.

John Langdon Down characterized the condition, but he did not have it. Therefore, “Down syndrome” is correct, as opposed to “Down’s syndrome.”

Down syndrome in the U.S.

In the early 20th century, physicians typically advised parents to place newborns with Down syndrome in institutions. Parents who refused this advice often had no supports or services. In the 1960s, parents worked together to start independent support organizations, working out of church basements and other community buildings.

In the second half of the century, government initiatives resulted in the gradual deinstitutionalization of individuals with developmental disabilities, including Down syndrome.

Today, people with Down syndrome live in a range of settings and many are successfully employed, encouraged by their family, friends, and organizations like the Agency for Persons with Disabilities.

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October is Disability Employment Awareness Month

On October 11, APD celebrated Disability Employment Awareness Month by co-hosting the 14th annual Disability Employment Awareness Celebration. The event, which APD hosted in collaboration with Blind Services and Vocational Rehabilitation, was held at Tallahassee City Hall.

About 200 people attended this year’s celebration, which was open to the public. Attendees included Rocky Hanna, Mayor Dailey, Mayor Pro Tem Curtis Richardson, and other state leaders. Mayor Dailey spoke at the event, as did leaders from APD, the Florida Department of Economic Opportunity, Vocational Rehabilitation, and ABLE United. Other speakers included Lively Technical College Office Assistant Jeremy Richard, Millennium Nail & Day Spa Trainee Torey Roberts, and Cayer Behavioral Group Office Assistant Connor Yeatts, who shared what having a job means to them.

Twelve companies from across the state were recognized with Exceptional Employer Awards for their strong commitment to hiring and retaining people with unique abilities. This year’s ceremony recognized the following employers:

  • Aramark Dining Services at Jacksonville University
  • Army and Air Force Exchange Service
  • Bob’s Space Racers
  • Chartwells at the University of Miami
  • Cleveland Clinic Martin Health
  • The Home Depot
  • Florida Department of Revenue
  • Golden Corral
  • The Chocolate Spectrum
  • Wawa, Inc.
  • ZVRS of Clearwater

These employers each received commemorative plaques that were donated by RESPECT of Florida and made by people with disabilities, who also presented them to the winners at the ceremony.

APD Director Barbara Palmer explained why it’s so important to recognize these employers and their contributions: “These business leaders know that individuals with unique abilities are some of the most dependable employees within their organization. We are trying to spread the word that hiring a person with a disability makes good business sense.”

This year’s event may be over, but there are still plenty of ways that you can join us in celebrating Disability Employment Awareness Month:


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Governor, Cabinet Recognize Developmental Disabilities Awareness Month in Florida

Governor Ron DeSantis introduced a resolution at the Florida Cabinet meeting today declaring the month of March as Developmental Disabilities Awareness Month in Florida. The resolution was adopted unanimously.

Representatives from the following organizations expressed support for the Cabinet resolution:

  • Agency for Persons with Disabilities (APD)
  • Family Care Council Area 2
  • Florida Developmental Disabilities Council
  • Florida Association of Rehabilitation Facilities
  • ABLE Trust
  • Vocational Rehabilitation
  • Blind Services
  • Department of Economic Opportunity
  • Arc of Florida
  • Association of Support Coordination Agencies of Florida
  • Support Coordination Association of Florida

Titus Williams of Tallahassee addressed the Governor and Cabinet on the importance of employment for people with developmental disabilities. Williams works in the cafeteria at W. T. Moore Elementary School in Tallahassee.

APD Director Barbara Palmer said, “We are excited to have Developmental Disabilities Awareness Month declared by the Governor and Cabinet. Thank you to Governor DeSantis for sponsoring the resolution. This is a wonderful opportunity to highlight the achievements and challenges of people with developmental disabilities in Florida.”

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March is Developmental Disabilities Awareness Month

This month, APD leadership, staff, partners, and customers are celebrating achievements made by people with disabilities and promoting a more inclusive society. Employment, education, and community living are the main themes of this year’s Developmental Disabilities Awareness Month. Join the conversation on social media with the hashtag #DDAwareness19.

Do your part to celebrate Developmental Disabilities Awareness Month! Read up on the issues and get to know the resources available to you:

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Orlando’s Discovery Cove Designated a Certified Autism Center

Discovery Cove in Orlando is SeaWorld Entertainment’s day resort park, where guests can swim with dolphins, snorkel among tropical fish and rays, and other unique animal interactions in a tropical setting.

Discovery Cove was recently designated a Certified Autism Center by the International Board of Credentialing and Continuing Education Standards (IBCCES), the industry leader in autism training for licensed health care professionals and educators worldwide. Discovery Cove earned the distinction after completing a staff-wide autism sensitivity and awareness training, as well as an onsite review of the park property and guest experience. Discovery Cove is now the first all-inclusive day resort and animal interaction park in the country to be certified.

Discovery Cove Ambassadors (staff) received specialized training to make sure they have the knowledge, skills, temperament, and expertise to cater to all children, including those with special needs. Training takes place in the areas of sensory awareness, environment, communication, motor and social skills, program development, and emotional awareness, as well as a comprehensive autism competency exam.

Working closely with IBCCES, the staff at Discovery Cove will be continually trained to assist guests with Autism Spectrum Disorder and their families, to help ensure a positive experience during their visit. The autism training must be taken every two years to maintain the certification.

Guests will also be provided with specific information about each of the Discovery Cove experiences, along with in-park accommodations to help them plan their day and make informed choices best suited to their individual needs.

The day resort park provides amenities, attractions, and services (including dining options) to assist and engage guests with special/sensory needs. It boasts a serene setting with lots of open, clear space, making the experience more accessible. Guests in need of some quiet time and relief from sensory stimulation can visit the Quiet Space, which has less traffic and noise. There are also animal encounter and swimming experiences for those wanting more stimulating experiences.

Discovery Cove’s website lists more details including a downloadable Sensory Guide for each ride or attraction: https://discoverycove.com/orlando/help/guests-with-disabilities/certified-autism-center/

Read the announcement press release here: https://www.prnewswire.com/news-releases/discovery-cove-is-now-a-certified-autism-center-300797981.html

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Together, We Can Achieve Even More

Patricia Houghland
Chair, Family Care Council Florida

In honor of National Volunteer Month, I’d like to express my great appreciation for the 180 members of the 15 local Family Care Councils (FCCs) for their hard work and service educating, empowering, and advocating for Floridians with developmental disabilities and their families.

These volunteers are the driving force behind measurable, effective change on the local level. They also partner with the Agency for Persons with Disabilities (APD) to make sure self-advocates and families have input in statewide policies.

We’ve made great progress, but there’s so much more we want to accomplish. With your help, we can achieve even greater things.

FCC members are individuals with developmental disabilities and parents, siblings, grandparents, and guardians of people who qualify for services from APD. They mentor families, meet with legislators, host educational forums, review APD policies, and more.

If you’d like to get involved as a member, connect with someone who is experiencing a similar journey, or learn more about the FCCs’ 25 years of service to our state, please visit www.fccflorida.org or call 1-800-470-8101.