Florida Agency for Persons with Disabilities

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APD Celebrates the 30th Anniversary of the ADA

Governor Ron DeSantis issued a proclamation declaring July 24th “Americans with Disabilities Act Awareness Day” to commemorate the 30th Anniversary of the federal bill in July.

The ADA was signed into law 30 years ago and has made a tremendous impact on the lives of individuals with disabilities. The ADA is an important civil rights act designed to ensure that people with disabilities enjoy the same freedoms as everyone else. President George H. W. Bush signed the ADA into law on July 26, 1990. Since then, the ADA has had a tremendous impact on American life and culture.

To commemorate Americans with Disabilities Act Awareness Day, a virtual statewide celebration was held with self-advocates, state and community leaders, and disability organizations. Florida’s celebration of the ADA was hosted by APD, RESPECT of Florida, ABLE United, Able Trust, Florida Association of Centers for Independent Living, Ability 1st, Blind Services, Vocational Rehabilitation, Florida Association of Rehabilitation Facilities, and many other stakeholders. The celebration included a welcome message from Governor DeSantis, which may be viewed here.

Governor Ron DeSantis said, “The ADA has removed barriers to allow individuals with disabilities the chance to achieve their goals. Florida is happy to be an accommodating state. Florida’s constitution, the ADA, and the laws of our state affirm equality and inclusion for people with unique abilities.”

Kazana McKenzie, a self-advocate with Pyramid Studios, opened the event by singing the National Anthem. Local and state leaders addressed the virtual gathering. The speakers included Governor DeSantis, Commissioner of Agriculture and Consumer Services Nikki Fried, State Representative Loranne Ausley, Secretary of State Laurel Lee, Tallahassee Mayor Pro-Tem Dianne Williams-Cox, Leon Commission Chairman Bryan Desloge, EEOC Representative Elaine McArthur, and ABLE United Executive Director John Finch.

The three keynote speakers shared how the ADA has helped them achieve their goals. They were:

  • Whitney Harris, Comptroller for the Florida Alliance for Assistive Services and Technology (FAAST)
  • Shevie Barnes, Self-advocate and Ms. Wheelchair Florida 2018
  • Peter O’Connell, Executive Director of the Center for Independent Living of South Florida

Agency for Persons with Disabilities Director Barbara Palmer said, “America is a better place because of the ADA. This landmark legislation was critical to allow people to be a part of their communities. The ADA provides vital access to buildings, jobs, education, and the entire community for individuals with special abilities.”

“Thirty years ago, the Americans With Disabilities Act was signed into law, and since then we’ve made continued progress in opportunity, accessibility, and equity for people with disabilities,” said Commissioner of Agriculture and Consumer Services Nikki Fried. “As we recognize the achievements of Floridians with disabilities, may we strengthen our commitment to the inclusion and support of those with diverse abilities in our workplaces and communities.”

State Representative Loranne Ausley said, “I am honored to be a part of this celebration marking 30 years since the passage of the Americans with Disabilities Act, which marked a life-changing shift in accessibility for millions of Americans with disabilities and forced a shift in attitude for Americans without disabilities.”

“The Americans with Disabilities Act is commemorating 30 years of progress in access and inclusion,” said Florida Secretary of State Laurel M. Lee.  “The Florida Department of State is doing its part to ensure that persons with disabilities know their voting options, have equal access to voting, and have confidence that their vote is safe and secure.”

“The ADA has done so much for us as a disability community. It has given us access to things that we would not have without it. But we have so much further yet to go,” said Comptroller for the Florida Alliance for Assistive Services and Technology (FAAST) Whitney Harris.

“The City of Tallahassee is proud to celebrate the 30th anniversary of the Americans with Disabilities Act,” City of Tallahassee Mayor Pro Tem Dianne Williams-Cox said. “By breaking down barriers to employment and beyond, this landmark civil rights legislation enables our society to benefit from the skills and talents of individuals with disabilities.”

“Over the past 30 years, the Americans with Disabilities Act has supported the rights of so many individuals to live, learn, and earn to their fullest potential,” said Leon County Commission Chairman Bryan Desloge. “While our work must continue, Leon County remains committed to ensuring individuals with disabilities have better access to local government programs and services and better opportunities for full and equal participation in civic and community life.”

Equal Employment Opportunity Commission Miami District Acting Director Bradley Anderson said, “The EEOC Miami District recognizes and celebrates the many positive changes brought about by 30 years of the ADA.  We will continue to use our resources to advise employers and employees on their respective ADA obligations and rights, and, where necessary, to take steps to enforce the statute. We are proud to play a crucial part in helping to achieve the ADA’s goal of eliminating workplace discrimination against qualified people with disabilities—people who contribute greatly to their workplaces and our country.”

“The passage of the ADA also sparked conversations about the need to provide those with disabilities the opportunity to save,” said John Finch, Director of ABLE United, Florida’s disability savings program. “Now thousands of Floridians are saving for their futures without jeopardizing eligibility for current or future benefits.”

Join us in celebrating this historic anniversary by enjoying a recording of the full event here.

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World Down Syndrome Day 2020: The Road to Independence

In 1868, a majestic mansion called Normansfield on Kings Road in Hampton Wick, United Kingdom opened its doors to 19 children with disabilities. In the nineteenth century, it wasn’t unusual for wealthy families to pay to place such children in facilities and to leave them there for life. However, this facility was unusual, in that it required these families to agree to have their child privately educated, and this sprawling mansion was held to the highest standards of comfort and hygiene.

Soon after opening, it was expanded to include schoolrooms and a farm with stables and a garden. Residents were taught how to ride horses, clean stables, and grow fruits and vegetables. They learned crafts like weaving and how to make puppets, which they then used to perform puppet plays. This commitment to educating and nurturing the creativity of these children was revolutionary, as most doctors of the time believed that the people who lived in these facilities were unable to learn anything.

The founder, however, was determined to prove that this was not the case. Above all, he was committed to ensuring that individuals with mental and developmental disabilities were given every opportunity to lead a quality life.


The story of Normansfield begins 22 years before it opened. In 1846, John Langdon Down had a life-changing experience while walking with his family through the fields around Devon in the UK. A sudden rainstorm forced the family to run in search of shelter, and they ended up at a nearby farm. Here, they were served tea by a girl with distinct facial features, who seemed unhappy and did not speak the entire time. This encounter affected Langdon Down, and, as he later wrote, he remained haunted by this girl and one question: “Could nothing for her be done?”

This question stuck with him for years afterward as he explains, “the remembrance of that hapless girl presented itself to me and I longed to do something for her kind.” This experience inspired John Langdon Down to study medicine. He was an excellent student and could have had an excellent academic career or a thriving private practice in London. However, he chose, instead, to dedicate his life to researching and describing various developmental disabilities and to improving the living conditions for those with these disabilities.

He began his medical career at a facility called Earlswood, where he worked as the Chief Physician. Here, he not only worked to improve the living conditions of Earlswood’s residents, but he was also a dedicated researcher. He became the first person to identify a specific group of patients with flat, broad faces, upward slanting eyes, and a fissured tongue — features that they shared with the young woman who continued to inspire Langdon Down. His research also generated the largest collection of clinical photography from the Victorian era, providing a visual record for a condition whose cause would not be discovered for nearly 100 years.

Even after leaving Earlswood, John Langdon Down maintained this commitment to understanding various conditions that would come to be known as developmental disabilities and to improving the quality of life for these individuals. This dedication ultimately led him to open a facility of his own. And armed with years of research and the vision of one girl who had forever changed his life, he founded Normansfield.


In 1961, a letter written by a prestigious group of genetic experts was published in the Lancet, one of the world’s oldest and best-known medical journals. This letter called for a renaming of the condition whose features were first described by John Langdon Down nearly 100 years earlier, but whose cause had only recently been discovered. This letter came two years after researchers had discovered that this condition was caused by the duplication of chromosome 21. This letter was signed by numerous experts on genetic conditions – and by one Norman Langdon Down.

Norman Langdon Down was the grandson of John Langdon Down. However, when Norman Langdon Down signed this letter, he likely had another John Langdon Down in mind as well — his cousin, who was born with the very condition that their grandfather had dedicated his life to understanding. Norman had been approached by one of the other signatories on the letter, who had requested Norman’s permission to lend his family’s name to this condition. His signature indicated his consent, and in 1965 the World Health Organization declared that this condition would henceforth be officially known as Down syndrome.


Since 2012, the UN has officially recognized March 21 as World Down Syndrome Day. This awareness day commemorates individuals with Down syndrome, but it’s also a perfect time to reflect on the progress that we’ve made in understanding Down syndrome and improving the conditions of individuals with it.

And it is in this spirit that we remember John Langdon Down, who was one of the earliest champions of independence for individuals with disabilities, including the condition to which he would ultimately lend his name. John Langdon Down was one of the first to demonstrate the learning capacity of individuals with developmental disabilities and to use this as an argument for their independence.

And this year’s theme, “We Decide,” builds on the work of John Langdon Down and countless others. This theme advocates for the decision-making rights of people with Down syndrome, arguing that “all people with Down syndrome should have full participation in decision making about matters relating to, or affecting, their lives.” This year’s theme encourages all of us to follow the example of advocates like Langdon Down and to not only celebrate trailblazers like John and Norman Langdon Down, but also to celebrate the many individuals with Down syndrome and continue supporting their independence.

For more information about Down syndrome, check out this blog post. You can also join us in celebrating this year’s theme by reading up on the decision-making rights of individuals with developmental disabilities here.

You can find more information about John Langdon Down and his contributions here and here.

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Developmental Disabilities Awareness Month: A Brief History

The history of Developmental Disabilities Awareness Month (DD Month) can be traced to 1987, when Ronald Reagan first declared March as a month dedicated to raising awareness and “according to our fellow citizens with such disabilities both encouragement and the opportunities they need to lead productive lives and to achieve their full potential.”

In the 33 years since Reagan’s declaration, attitudes toward individuals with developmental disabilities have shifted and legislative initiatives and programs have increasingly supported the independence of individuals with developmental disabilities. However, there is still work to be done, as we learn more every day about this broad group of conditions. And the more we learn, the better equipped we are to fulfill that vision of inclusion and independence that has been a part of DD month since the beginning.

Defining Developmental Disabilities

According to the CDC, developmental disabilities are a range of conditions characterized by impairment in physical, learning, language, or behavioral development. Developmental disabilities generally begin early in life – often before birth – and are typically lifelong conditions that affect a person’s ability to function day-to-day.

This represents a range of different conditions, which can cause physical and/or learning impairments of varying severity. As a result, the individuals’ needs may vary significantly as well. However, these represent a group of disabilities that are often grouped together – so much so that most states even have waiver programs and services specifically designed to meet the needs of individuals with disabilities.

How have such programs developed? To answer this, let’s look at the history of developmental disabilities in America, which centers on two related 20th century initiatives.

Developmental Disability Legislation

This story begins in 1963, when John F. Kennedy signed the law that would eventually be known as the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). This legislation, which began as an amendment to the Social Security Act, was the first major legislation to combat mental illness and intellectual disabilities.

In 1963, when this law was signed, developmental disabilities received very little federal funding or attention. However, Kennedy, whose sister Rosemary was born with intellectual disabilities, made them a priority for his administration. Partly because of the Kennedy family’s commitment to intellectual disabilities and partly because of the commitment of various grassroots movements by family members of individuals with developmental disabilities, public attitudes toward individuals with developmental disabilities shifted significantly in the years that followed.

In 1970, Kennedy’s amendment was expanded and renamed. It became known as the Developmental Disabilities Services and Facilities Construction Amendment of 1970, making this the first law to introduce the term “developmental disability.” This allowed for an expansion of the previous law, which had only included individuals with intellectual disabilities, to cover individuals with cerebral palsy, epilepsy, and certain other neurological conditions that occur in childhood.

This law became the Developmental Disabilities Assistance and Bill of Rights Act in 1975 and was amended several times in the next decade. The 1975 amendment demonstrated a significant shift away from institutionalization and toward independence, as it introduced language requiring “habilitation in the least restrictive setting that maximizes developmental potential” and specified that public funds should not be provided to institutions that don’t meet minimum quality-of-life standards. In 1978, the law was again amended, this time to include definitions of service areas that are necessary in order to support individuals with developmental disabilities. With these changes, the DD Act increasingly stressed independent living within the community over institutionalization.

Meanwhile, another shift was happening. Examinations of Medicaid spending in the early 80s revealed that a disproportionate amount of resources was being used for institutional long-term care. As a result of these findings, Medicaid began looking for alternatives to expensive institutions, which led to the development of the Home and Community-Based Services (HCBS) waiver program. This program was established in 1981 and was incorporated into the Social Security Act in 1983.

This program gave states the ability to meet the needs of people who prefer to get long-term care services and supports in their home or community, rather than in an institutional setting. It also enabled states to identify populations that were at risk of institutionalization and to design waiver programs to meet their specific needs.

As the history of the DD Act demonstrates, individuals with developmental disabilities were one such population. And by the time the HCBS waiver program was established, service areas and alternatives to institutionalization had already been identified. So, it makes sense that many states, including Florida, developed programs to serve the needs of individuals with developmental disabilities.

Florida’s Waiver Program

The DD Act has redefined developmental disability many times since 1970, when the term was first introduced. The 1978 amendment switched from a list of specific conditions to the more generalized approach that we still use today. As a result, conditions that qualify as developmental disabilities for the purposes of the HCBS waiver may vary from state to state.

Florida Statutes recognize seven conditions that, in their most severe forms, meet the requirements established by the DD Act and Medicaid rules. They are autism, cerebral palsy, spina bifida, Down syndrome, Prader-Willi syndrome, Phelan-McDermid syndrome, and intellectual disabilities. Each has unique challenges that impact the services required to support affected individuals. But this diversity of needs also means that there is diversity in terms of capabilities.

We can honor the spirit of DD Month by recognizing the diversity within this group and celebrating the steps that we’ve taken to ensure that individuals with developmental disabilities continue to receive the encouragement, opportunities, and support that are the foundation on which DD Month was founded 33 years ago.

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APD Celebrates Developmental Disabilities Awareness Day at the Capitol

February 11 was Developmental Disabilities Awareness Day in Florida, as declared by Governor Ron DeSantis. To commemorate this day, organizations, agencies, and disability advocates from all over the state gathered at the Capitol for the 2020 Developmental Disabilities and Transportation Awareness Day event.

In addition to Developmental Disabilities Awareness Day, this event commemorated Public Transportation and Transportation Disadvantaged Legislative Awareness Day, which is also observed on February 11. The Florida Developmental Disabilities Council (FDDC), The Arc of Florida, the Florida Commission for the Transportation Disadvantaged, and the Florida Public Transportation Association worked together to host this event, which highlighted the intersection between transportation concerns and those of individuals with developmental disabilities.

Disability advocates came from all over the state for the opportunity to meet with legislators to advocate for individuals with developmental disabilities, share what the iBudget waiver has meant to them, and highlight the need for alternative approaches to transportation. Transportation is an issue that affects many individuals with developmental disabilities who often rely on public transportation and/or require vehicle modifications to meet their transportation needs.

As a part of the event, display booths were set up on the second floor of the Capitol Rotunda, where various organizations, including APD, shared information and answered questions about available resources and issues affecting individuals with developmental disabilities. There were vehicle displays in the courtyard, where various transportation organizations could share valuable resources and information.

The day also included a full program with speeches by advocates and policy makers. Speakers included Rep. Ray Rodrigues, who spoke out in support of people with developmental disabilities, FDDC Executive Director Valerie Breen, The Arc of Florida’s Kirk Hall, and APD Director Barbara Palmer, among others.

In her speech, Director Palmer thanked attendees for their support and highlighted Governor DeSantis’s Bolder, Brighter, Better Future budget recommendation, which proposes $1.5 billion to serve Floridians with developmental disabilities: “I mainly want to thank you all for taking the time to come up here and to talk with your legislators and educate them about your lives. I cannot tell you how important that is. The Governor has put together a really good budget and also is supporting you all moving forward, making things better in your life.”

Developmental Disabilities Awareness Day offers an invaluable opportunity to educate the public on issues that are central to Florida’s most vulnerable population but also to show support for the iBudget waiver and other crucial services that individuals with disabilities rely on daily.

In the words of Family Care Council Florida Chairperson Patricia Oglesby: “Family Care Council members across the state are excited to be in Tallahassee for Developmental Disabilities Awareness Day. It is a great opportunity to meet with our legislators to share concerns, as well as express our gratitude for the services and programs that help Floridians with developmental disabilities live in their communities. We are truly stronger together!”

For more about Developmental Disabilities Awareness Day and the Developmental Disabilities and Transportation Awareness Day event, check out the Governor’s proclamation, event video, and pictures, below.

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Human Trafficking Awareness: We All Have a Responsibility to Prevent Abuse

On Saturday, you may find yourself surrounded by people dressed in blue. This is because January 11 is Human Trafficking Awareness Day, and in honor of this day, the Department of Homeland Security (DHS) hosts the Blue Campaign – a nationwide movement to bring awareness to the dangers of human trafficking.

Human trafficking refers to a form of abuse and exploitation. It is the act of using force, fraud, or coercion to recruit, hide, transport, sell, or buy a person for sex, labor, or services as a slave. Human trafficking occurs in every country, including the United States. Although this is a national issue, Florida is one of the states where human trafficking is most likely to occur. In fact, it’s ranked third in the nation for potential human trafficking.

People with developmental disabilities are especially likely to experience abuse, neglect, or exploitation, which is why APD has a Zero Tolerance initiative in place to protect this vulnerable population from human trafficking and other violations. The Zero Tolerance initiative is APD’s aggressive and proactive approach to dealing with all forms of abuse, neglect, exploitation, or sexual misconduct committed against an individual with a developmental disability.

Awareness is a key part of this initiative, as it takes everyone in a community to take a stand against abuse. We are all responsible for recognizing and reporting abusive, exploitative, and neglectful behavior. In fact, reporting such behavior is required by law.

Signs of abuse may be physical, as many traffickers beat or torture their victims. However, often, the signs are less obvious. Abusers may lie, withhold wages, threaten harm, intimidate, humiliate, or make false promises of love or friendship and/or money or reward to manipulate their victims.

Human Trafficking Awareness Day offers an opportunity for us to educate ourselves on the issue, learn the signs, and report if we suspect anything. Here are some ways that you can participate in this awareness day and help bring an end to human trafficking and other forms of abuse:

  • Take part in DHS’s Blue Campaign by wearing blue and sharing relevant social media content. The campaign’s website even has a library of social media posts that you can use to help promote the cause.
  • Learn the signs of abuse. One good place to start is the Zero Tolerance initiative section of the APD website, where there is an extensive list of the signs associated with different types of abuse, among other educational resources.
  • For an overview of APD’s Zero Tolerance initiative, read this brochure.
  • Sign up for APD’s Zero Tolerance training, which is required for APD providers but is also available to the general public.

Remember, if you suspect that someone is being abused, neglected, or exploited, you are required by law to report them.

Call 911 if the person’s life or health is in immediate danger. Otherwise, you can report suspicious behavior by calling the Florida Abuse Hotline toll-free at 1-800-96-ABUSE (1-800-962-2873), filing a report online at reportabuse.dcf.state.fl.us, or faxing a statement to 800-914-0044.

For more information on human trafficking or to report potential human trafficking situations, please visit https://humantraffickinghotline.org/.

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Bright Lights, New Fires: A Tacachale Story

In 1990, the Sunland Training Center of Gainesville officially changed its name to Tacachale, a word derived from a Timucuan ceremony, meaning “lighting a new fire.” This occasion marked a turn for the center, and the new name reflected the hope for the future of this longstanding facility, which opened in 1921 as The Florida Farm Colony for the Epileptic and Feeble Minded.

As we head into a new decade and as Tacachale approaches its 100th birthday, the center is still lighting ceremonial fires as a part of its annual holiday events.

This year’s tree lighting ceremony, which took place on December 5, was a celebration of new fires, set against reminders of the old ones. Standing guard over the field where the holiday festivities took place, is a water tower with Tacachale painted on it.

On November 1, 1921, after six years of planning and construction, the Farm Colony opened its doors. The property spanned 4,000 acres, 3,000 of which were donated by the citizens of Alachua County. At the time, the facility included three buildings, where the 240 residents lived, worked, and attended school. There was also a farm, where residents who had the physical capability worked. In 1927, the farm consisted of 198 acres of corn, peanuts, and peas, and over the following decades it grew to include cows, pigs, geese, and more than 25 different fruits and vegetables.

At the 2019 Tree Lighting Ceremony, members of the Gainesville community and Tacachale staff and residents took their magical surroundings in together. They were all aglow in the same holiday lights. People huddled together to ward off the cold of the evening as volunteers served cocoa and cookies. The sounds of voices mingled with the festive songs of a local orchestra.

These reminders of the holiday season also served as reminders that Tacachale is hardly a place apart from the community, but rather is a beacon at the heart of it. Local news anchor and master of ceremonies David Snyder underscored this point as he introduced the ceremonial lighting of the Tacachale Christmas trees. “We are going to be lighting some lights tonight that symbolize the Christmas season,” he said, “but Tacachale is a light in our community 365 days a year.”

In 1957, the Farm Colony had a population surge and a name change to the Sunland Training Center of Gainesville. This name distinguished it from the newly opened Sunland Training Centers of Orlando, Fort Myers, Marianna, Miami, and Tallahassee, which all opened between 1960 and 1967. During this period, the census reached a peak, swelling to more than 2,000 residents.

The 1970s saw a shift in attitude and people with developmental disabilities were increasingly integrated into mainstream society. Sunland expanded their educational programs and began offering vocational training with the goal of empowering residents to work within the community. This philosophy would eventually lead to the revitalization effort of the 1990s, when Sunland Training Center of Gainesville became Tacachale. This name change signaled a new person-centered approach that focused on the gifts, talents, and skills of each resident.

The first Tree Lighting Ceremony was held in the middle of this shift toward a philosophy of community participation and individualized supports. Thirty-five years ago, Tacachale wasn’t even Tacachale yet, but the lights of the holiday season were already bringing it together with the community in anticipation of the new fires to come.

At the 2019 Tree Lighting Ceremony, Tacachale Assistant Superintendent Julie Waldman took a minute to reflect on these shifts in ideology and the expansion of Tacachale and its holiday events. “Thirty-five years ago,” she said, “we started this tradition and it is still going strong, gets better every year. The lights are brighter, the smiles are bigger.” Waldman’s words rang out into a sea of bright lights and big smiles.

Those smiles remained as the music paused and the lights went out in preparation for the ceremonial lighting of the four trees at the heart of the festivities. In unison, led by David Snyder, the gathered crowd counted down, “ten, nine, eight.” Wisps of breath danced around the audience, as people huddled together for warmth against the cold.

But they kept counting down. “…three, two, one…” And then as Snyder shouted, “Light it up!” the trees sprang to life.

The world was quiet, but only for a moment, as the sound of sleigh bells rang out in the distance, signaling the arrival of Santa Claus. And with this, Tacachale joyously welcomed the holiday fires and looked forward to the ever-brighter lights and ceremonial fires of the new decade to come.

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International Day of Persons with Disabilities 2019: Building a Better Future

December 3 is International Day of Persons with Disabilities, a global awareness day that celebrates the achievements of people with disabilities and those who are making the world a more accessible place.

Every year, the United Nations declares a theme. This year, the theme is Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda.

This theme looks to the future, asking us to envision a more inclusive world – one in which everyone can participate in the process of building a better future. It is a reminder that we all have a part to play in building a more collaborative world.

One starting place is APD’s etiquette guide Manners that Matter, which provides tips for interacting with people with disabilities. Here are just a few of these recommendations:

  • Use person-first language, which emphasizes the person rather than the disability (e.g., “person with a disability” instead of “disabled person”)
  • If you offer assistance, wait until the person accepts; listen to or ask for instructions.
  • Speak directly to the person, not to their companion. Do not stare.
  • Make eye contact when speaking with a person who is in their wheelchair or scooter.
  • To get the attention of a person who is deaf, tap them on the shoulder or wave your hand.
  • When greeting a person who is blind or visually impaired, wait for them to extend their hand first. You could say, “May I shake your hand?” as a verbal cue. Always identify yourself and others who may be with you.
  • Listen attentively when a person’s speech is slow or different. Be patient and wait for them to finish, rather than speaking for or correcting them. If necessary, ask questions that require short answers or perhaps a nod or shake of the head. Never pretend to understand; instead, repeat what you have understood and allow the person to respond.

Check out the full guide here for more tips and resources.

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APD Supports Military Families

This Veterans Day, we honor our country’s servicemen and women and the sacrifices they and their families make, both great and small.

One of the major sacrifices military families make is moving frequently. This is particularly challenging for those receiving important Home and Community-Based Services (HCBS) through Medicaid. Transferring to a new state can mean losing these services, requiring them to apply all over again. In many states, this also means they will be put on a waiting list, a list they may have already been on in previous states.

However, five years ago, Florida became the first state in the country to enact a law that makes it easier for military families who are transferred to Florida to continue receiving Medicaid waiver services. This law allows for an expedited application process and helps ease some of the burdens that come with relocation.

Here is a brief overview of the requirements to qualify and apply for APD services under this law:

  • Applicants must have a parent or guardian who is an active-duty service member at the time of the transfer.
  • The applicant must have one of the following seven developmental disabilities: autism, cerebral palsy, intellectual disabilities, Down syndrome, Prader-Willi syndrome, or spina bifida, or they must be a child age 3-5 who is at high risk of a developmental disability.
  • They must also be receiving Home and Community-Based Services (HCBS) in another state.
  • Families who satisfy these requirements should fill out an application as soon as they receive the order to transfer and before moving to Florida in order to take advantage of this expedited process.
  • A copy of the transfer order must be submitted with the application. This process will be finalized once the applicant has moved to Florida.

To learn more, check out this informational flyer.


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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.