Annual Family Cafe Cooks Up Feast of Fun and Facts

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By: Andrew Sagona

The Family Café is a free conference for Floridians of all ages with disabilities and their families to learn about the latest developments in the Florida disability community and to attend the annual Florida “Governor’s Summit on Disabilities.” I have been attending Family Café for over ten years, and I still feel the same sense of wonder and excitement now as I did at my first Café.

A group of 10 people sit around a large table and most of them smile at the camera.This is in part because the atmosphere is fun, warm, friendly, and inclusive. There is always something fun to do for everyone and there are new and interesting things to learn at the Café, whether it is information on disability advocacy, an invention that helps people with disabilities, or a law that fights discrimination.

 

However, the main reason for my wonder and excitement – my favorite part of attending Family Café – is getting to meet new friends and see old friends again. Many of the people at Café attend the conference every year, the result being that you begin to see familiar faces at each conference. For some, like myself, Family Café serves as an annual family reunion of sorts. After attending the conference even once, you make some very close friends – to the point that they become your second family. But because of time and distance restrictions, we are unable to see each other at any other time of the year. So when the three days of Family Café rolls around each year, there is a great deal of anticipation, happiness, and joy when you see your “family” again.

 

A banner hangs from inside a multiple-story building that has a man in a chef's hat (the Family Cafe logo) and the words "Welcome to the Annual Family Cafe"")Ultimately, friendship is the defining trait of Family Café. It is the heart of Family Café because there is a sense of acceptance and belonging at the conference that doesn’t exist to the same extent outside of the conference. Many attendees spend all but three days of their year experiencing stares, strange questions, and even discrimination. However, for the three days each June that the conference is held, all of that goes away. For those three days, everyone is kind to each other and no one is viewed as “less than” anyone else. For those three days, everyone is welcomed.Many people stand and sit and are scattered around a large room that has many display posters standing up on tables

 

This year marked the 18th Annual Family Café, and it was held from June 10–12 at the Hyatt Regency hotel in Orlando, Florida. According to Family Café founder and organizer Lori Fahey, this year’s conference was the largest in history: approximately 10,000 people in attendance, over 160 training sessions, and more than 100 booths filled the exhibition hall. The Café also featured fun activities, including a Gatorland wildlife show, rock climbing wall, photo booth with Superman, and a fashion show. Each Family Café features three keynote speakers and two and a half days of workshops, which are informational presentations given by professionals, business owners, governmental agencies, and self-advocates covering diverse topics such as Many people stand and sit to watch a group of about 6 people perform.education, employment, starting a business, social security, Medicaid, technology, medicine, and advocacy. In addition, Family Café provides many activities for individuals with disabilities like paddle boarding, scuba diving, and sensory rooms.

The conference also has an exhibition hall filled with booths sponsored by vendors, businesses, and government agencies with the goal of letting attendees discover new products and services, or speak to agency representatives to help them with problems they are facing

 

This year’s “Governor’s Summit on Disabilities” featured information relating to the disability community. The biggest news announced at the summit was the introduction of the ABLE Trust, a savings account for people with disabilities that allows them to save money above the $2,000 limit set by Social Security, as well as the news that, as a result of increased funding, 5,000 individuals will come off the 20,000 people waiver waitlist this year.  The summit was attended by Governor Rick Scott, members of the Florida Legislature such as Senate President Andy Gardiner, and heads of governmental agencies such as Barbara Palmer of the Agency for Persons with Disabilities, Pam Stewart of the Department of Education, and Florida Surgeon General Celeste Phillip.Governor Rick Scott speaks to a crowd from behind a podium. A sign language interpreter signs to his right.

 

The Family Café conference isn’t just about education and policy, though. It is also about having fun and making new friends–and the fun begins with the hotel. Each year, the hotel chosen for the conference has something for everyone: massive pools for kids to play in, restaurants for families to dine at, and much more. This year’s hotel was no exception. The Hyatt Regency had three pools to choose from, the largest of which featured a water slide and other amenities. The Regency also had numerous eateries, including bars for the adults, an up-scale restaurant, and a 50’s-style diner.

 

The fun continues with the conference itself. Throughout the three-day event, DJs pumped music throughout the convention hall, enticing children and adults alike to dance. Performance groups, such as bands, a choir, and a dance troupe, performed throughout the Café as well, and they entertained large crowds with their talents. And there were lots of giveaways, with prizes ranging from gift cards to PCs.

A crowded room of people, in the background is a structure that resembles the white house.

 

The culmination of the fun was a massive dance party that was held on Saturday night. For more than two hours, hundreds of attendees packed a large ballroom and danced the night away to all kinds of popular music. Children and adults “raised the roof,” breakdanced, and danced free style. There were organized dances as well, with songs like “YMCA” and the “Cha-Cha Slide” bringing everyone together to dance in unison. The sense of excitement and pure joy that filled the ballroom was infectious.

 

For more information on Family Café, visit www.familycafe.org.

Summer Fun and Discrimination against Kids (with or without disabilities)!

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By: Matthew Dietz

A graphic with a white background and black text that reads keep calm and no kids allowed with a crown above it

Unless the housing facility is a qualified 55 and over housing development, a housing provider cannot have rules that treat children differently, and less favorably than adults. When the US Congress amended the Fair Housing Act in 1988, it prohibited housing practices that discriminate on the basis of familial status.When it amended the Act, Congress recognized that “families with children are refused housing despite their ability to pay for it.” In addition, Congress cited a HUD survey that found 25% of all rental units exclude children and that 50% of all rental units have policies that restrict families with children in some way. The HUD survey also revealed that almost 20% of families with children were forced to live in less desirable housing because of restrictive policies. Congress recognized these problems and sought to remedy them by amending the Fair Housing Act to make families with children a protected class. So any rules, that do not have a legitimate safety justification, cannot indicate a “preference, limitation, or discrimination” against children under the age of 18. This includes rules that prohibit children from common areas in the facility with or without supervision, or limit the facilities of the housing development to adults. All rules must apply to children and adults equally, and cannot solely target children’s behavior.

If rules have a legitimate safety rationale, then such rules may be legitimate. But, again rules such as all children under sixteen must be supervised by an adult does not have a safety rationale, but a discriminatory basis against loud teenagers. On the other hand, a fifteen year old at a gym may injure him or herself on free weights without having supervision.

Summer camp must be inclusive

Over the past fifteen years, I have had several cases involving children who were not permitted to go to the summer camp of their choice, or were segregated in the summer camp because of the child’s disabilities. A summer camp, like any other public accommodation under the Americans with Disabilities Act, must provide reasonable accommodations for campers with disabilities, and must not segregate them from othJordan4er students. Camps operated by governmental entities or colleges have a broader duty to accommodate campers with disabilities than some private entities that do
not have the same resources as a governmental entity. Examples of situations which I have encountered over the years are as follows:

  • Children who are Deaf – Deaf kids have the right to a qualified sign language interpreter for all programs and services of a camp that involve communication that is long, complex, or important. Examples of this would be instructions on how to play a complicated game, story time, puppet shows, and educational instruction. If there are games that involve communication, then an interpreter would be appropriate so the Deaf child is included.
  • Autistic kids – If a child who lives with autism has a one-on-one aide at school, for the same reasons, that child may need a one-on-one aide at a camp. Further, if a child needs further instruction in a game, or assistance with social interactions, that would be an accommodation that must be provided.
  • Kids who have a medical condition such as Diabetes – If a child has a medical condition, or needs assistance with a medical condition, such as diabetes or HIV, then the question is whether the child poses a direct threat to his or her own health or the safety of others. If a child needs minor assistance with a medical condition, or can manage his or her own medical needs and monitoring, a camp cannot discrimiJordan2nate against these children.
  • Kids with mobility impairments or other physical disabilities – Camps, like any other public accommodations, must have their facility accessible to children with disabilities. Older camps must do modifications that are readily achievable, easily accomplishable and able to be carried out without much difficulty or expense, and those camps altered or built after 1991 must be constructed accessibly. The camp is also responsible for making reasonable accommodations for campers with disabilities, which may involve some personal services, such as assistance in dressing, if similar services are available for able bodied campers.
  • Kids with allergies – Kids who have allergies cannot be excluded from camps, and camps must be prepared to exclude certain allergens to accommodate a camper, and be trained in the event a camper has an allergic reaction. It would not be unreasonable to expect camp counselors to learn how to administer epinephrine auto-injector (“Epi-pen”) shots and dispense asthma medication, assist in administering Diastat for seizures in emergencies or otherwise teach camp counselors in basic first aid or CPR.

Parents can choose to send their child to a segregated camp, because some camps may provide special skills or advantages for children with disabilities, but the choice of going to a specialized camp is a choice, such as camps where all children are deaf.
However, all children may not be able to go to integrated camps. For example, there may be children with developmental disabilities or intellectual disabilities who would not be able to care for themselves at a sleep-away camp, and it would be a fundamental alteration of the camp’s programs to develop a program for one child’s disability. Further, if a child is dependent on mechanical supports, a camp would not be required to hire medical personnel to accommodate medically complex children. For these kids specialized camps are a phenomenal way to get out and enjoy the community. For example, Nicklaus Children’s hospital operates the VACC camp for technologically dependent children which includes swimming, field trips to local attractions,campsite entertainment, structured games, “free play”, to promote family growth and development while enhancing these kids’ self-esteem and social skills.

It’s so damn hot – my kid has asthma and needs an air conditioner

Last year, we represented a mother who had a child who lived in HUD-subsidized low-income housing. Asthma is often triggered by inhalation of air particles that contain allergens such as pollen, mold spores, dust mite droppings and animal dander. Air conditioners contain filters that collect and store these particles, keeping intake to minimum. Air conditioning also helps eliminate humidity on hot Florida nights which enables mold and algae to grow much more rapidly than it could if it were living in dry air. Some children and adults suffer from asthma to the degree that not having air conditioning may result in serious harm and hospitalization. Requesting to install an air conditioner unit in a home or apartment would be a reasonable accommodation for a person with a disability.

According to the Fair Housing Act, a tenant with a disability can request a reasonable modification. According to HUD Guidance, “A reasonable modification is a structural change made to existing premises, occupied or to be occupied by a person with a disability, in order to afford such person full enjoyment of the premises. Reasonable modifications can include structural changes to interiors and exteriors of dwellings and to common and public use areas.” Under the Fair Housing Act, a housing provider must permit the modification, the tenant is responsible for paying the cost of the modification. If the housing provider is a public housing authority or a housing provider that receives federal financial assistance, the modification must be paid for by the housing provider unless providing the modification would be an undue financial and administrative burden.
Another example modifications can be a pool lift!

Discrimination in Pool Rules

  • No inflatable flotation devices.
  • Water wings, swimmies, floats, bathing suits rings, and other inflatable devices are not permitted in the pools.
  • Absolutely no dogs allowed in pool area

Also, under the Fair Housing Act, persons with disabilities can ask for “reasonable accommodations in rules, policies, practices, or services, when such accommodations may be necessary to afford … person(s) [with disabilities] equal opportunity to use and enjoy a dwelling.” So when a person is required to use water wings, floats, special swimming devices, they can do so. In order to request an accommodation, the person needing an accommodation should ask the housing provider, and if the disability is not obvious, then the person may need to obtain verification from a doctor, therapist, or any other provider verifying the disability and need for the accommodation.

In addition, “no dogs allowed” rules do not apply to service or emotional support animals, where their presence is necessary for the person with a disability equal use and enjoyment of the premises. The Fair Housing Act and the ADA does not override public health rules that prohibit dogs in swimming pools. However, service animals must be allowed on the pool deck and in other areas where others are allowed to go.

Autistic Man Fired from Cargill because of stereotypes about Diabetes

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On February 4, 2014, Nik Stahly was excited to get up and go to his new job, his first job. Nik obtained a job with Lab Support, an employment staffing company, who placed Nik at Cargill, the global food processing company. Nik’s stepfather, Brian Tygesson, took Nik to the store to purchase the required steel-toe shoes to get ready for the job. Nik has autism and wanted to ensure that no detail involving his job was overlooked.

When he arrived at Cargill, Nik was greeted by the human resource and safety supervisor, and Nik and his stepfather spoke to the supervisor and explained that Nik was diabetic and needed a place to leave his testing supplies so he could test his blood sugar levels. Nik had been receiving care for his type one (juvenile) diabetes and receives treatment by an insulin pump, glucose tablets, and requires regular testing. Because of his diligence with his care, Nik’s diabetes is well managed and he has never had a severe hypoglycemic episode. The Cargill supervisor offered to allow Nik to leave his testing supplies in her office so they would not get lost or damaged.

For his first day, Nik had an uneventful day working in the warehouse in which he carried boxes of butter and measured ingredients. On his second day, Nik reported for his scheduled shift at 4:00 A.M. and emptied cans of tomatoes until 7:00 A.M. Several hours later, Nik began to work with two other workers sorting and preparing cilantro for cutting and shipping. Having completed that task, Nik began to feel as if his blood glucose levels were falling and needed to test his glucose levels during a break. During the break Nik tested his blood glucose level, which was a little low. So, during the break Nik drank a soda and ate a snack of potato chips and was fine, returning to work on time. Nik completed the remainder of the workday without incident, working until approximately 2:00 P.M. However, Nik was called into the safety supervisor’s office and questioned about his diabetes and his need for testing. He was asked whether it was his fault when his glucose levels dropped. Nik informed the safety supervisor once he gets into a routine, his glucose levels should be fine, but he may need a short break to have a snack. Once he has a snack, he is ok.

That night, Nik was informed that he was fired because he was not the right fit for the job and was “shaky” as a result of his diabetes. Nik was confused and could not understand that if he was doing everything that his doctor told him to do, why was he fired? Nik’s first job lasted two days. Nik was the victim of disability discrimination and should not have been fired, and Disability Independence Group is pleased to represent Nik.

People with diabetes face unfair stereotypes and discrimination at work, at school, and elsewhere in their lives. The American Diabetes Association is committed to ending this discrimination through its legal advocacy program.

“No American should lose a job because of speculation or stereotypes about their disability. Employers have a duty to judge people on their actual abilities and not preemptively exclude them by labeling them a “safety” concern. That’s not only the law, but a fundamental part of who we are as Americans.”

Kathy Butler, chair of the American Diabetes Association Legal Advocacy Subcommittee, employment lawyer in Houston, TX.

Further, the medical profession and those endocrinologists who care and treat persons with diabetes confirm the well-known fact that persons with controlled diabetes should not be precluded from active employment:

“Mild symptoms of hypoglycemia (low blood sugar) are commonly felt by people with insulin treated diabetes. These symptoms are an early warning signal that leads to effective self-treatment by ingesting a source of sugar, like juice or regular soda, in order to prevent further declines in blood sugar. Effective self-treatment of early symptoms in no way indicates that the person with diabetes is unable to carry out any job-related tasks for which he/she is otherwise qualified. Nor does it indicate greater risk for job-related injury.”

Dan Lorber, MD, FACP, CDE Director of Endocrinology at New York Hospital Queens, Associate Director of the Lang Center for Research and Education, American Diabetes Association volunteer.

For more information about diabetes, please see the Americans with Diabetes website at www.diabetes.org

The Wallet Card presented at the Family Café

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By Rachel Goldstein

Senior Staff Attorney Rachel Goldstein attended the 17th Annual Family Café in Orlando, Florida and gave a presentation, One Tool for Successful Interactions with Police: The Wallet Card. The Wallet Card Project is the product of a unique collaboration between Disability Independence Group, the Coral Gables Police Department and the UM-NSU Center for Autism and Related Disabilities. For more information about the Wallet Card or to get a Wallet Card, visit our website at http://www.justdigit.org .

Rachel Family Cafe Wallet Card Presentation 2

A Mother of an Adult with Down Syndrome’s Worst Nightmare

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A Mother of an Adult with Down Syndrome’s Worst Nightmare

Karl Hunt

Karl Hunt

Mr. Dietz,

I have just found a note hanging on my door that Reflections will not be renewing my lease. my worse fear, Karl has been hiding in his room since this has all began. the officer had told the Manager that this was all a mistake but now my world has come crashing down. i cannot even think of where i will get the money to move and work at the same time or even where we will go. i am sorry, bad things do happen to good people. . i have no idea what we are going to do, thank you for all your support so far but to add to this burden i am going to have back off this and make sure Karl doesn’t end up homeless.

Dyan

On August 25, 2012, Karl Hunt, a 23 year old man with Down Syndrome, went into the office of his Palm Beach rental community, Reflections.  Karl loves to watch a Japanese anime cartoon television series called Fullmetal Alchemist.  While explaining the cartoon in the office, he drew on a map of the property and the property manager thought he said that he was going to sacrifice her, and then trap all of the residents in their apartments and set the property on fire.

As a result of this, the property manager decided that Karl, or his mother Dyan, should not live in Reflections which was then owned by the nationwide owner of rental property, AIMCO.   Dyan Hunt tried to explain that Karl has an intellectual disability and because of his disability, he cannot adequately explain himself. Dyan also offered to send Karl to a day facility so he would not be at the development when she was at work.

Despite Ms. Hunt’s pleas, the property manager rebuked Ms. Hunt and advised that words like that “should not come out in a joking matter. It did not make a difference – Karl had to go.

Five days after the incident, the property manager called the police to Ms. Hunt’s home and deliver a trespass notice.  They came to the Hunt home with the police deputy to confront the intellectually disabled young man.  According to the AIMCO property log:

Karl was asleep Deputy Kushell had her wake him up.  He came out to the living room and was told that he was not in any trouble but he would be if he is to ever return to the Clubhouse/Office at any given time.  This was repeated to him 2 times, and then Deputy Kushell asked him to repeat it so that he understands what it means and will obey his orders.  He was advised that if he is seen or visits the Clubhouse/Office that he will go with him to the police department and he will not be home. Karl nodded and repeated he understood and said he will not visit us anymore.

For the six years that Karl had lived at Reflections, he was well known to the employees of the property, and this was a surprise for Dyan.  During the day, Karl Hunt would go to the common areas, and listen to Disney sing-a-long and Pokémon songs on his headphones.  The property manager would constantly yell at Karl and demand that he leave the pool area or the community room, but no one ever complained to his mother about Karl’s behavior.  Further, unbeknownst to his mother, Karl was used to perform tasks around the development, such as cleaning bathrooms, taking out the trash, and other jobs in the community, without being paid.

In preparation for having to move, Ms. Hunt was forced to pack up everything in her apartment unit and begin the moving process, giving away much of her property.  However, on or about November 29, 2012, a new management company, JMG Realty, Inc., bought Reflections of West Palm Beach, and permitted the Hunts to remain residents at Reflections. Prior to allowing the Hunts to remain on the premises, they interviewed the employees and determined that unless they had experienced problems at the facility, they should renew the Hunt’s lease.

The Fair Housing Act makes it illegal to discriminate in housing practices on the basis of a disability.  A person’s disability, no less than his or her race or sex, is an impermissible reason to deny equal access to housing opportunities. Congress’ intent in enacting the Fair Housing Act is as follows:

The Fair Housing Amendments Act … is a clear pronouncement of a national commitment to end the unnecessary exclusion of persons with handicaps from the American mainstream. It repudiates the use of stereotypes and ignorance, and mandates that persons with handicaps be considered as individuals. Generalized perceptions about disabilities and unfounded speculations about threats to safety are specifically rejected as grounds to justify exclusion.

On behalf of Karl and herself, Dyan Hunt brought an action against the property owner and manager, AIMCO, for housing discrimination.  If any housing provider decides that a person with a disability is a direct threat to the safety of others, a housing provider is required to conduct an individualized assessment that is based on reliable objective evidence.  Guidance by the Department of Housing and Urban Development provides as follow:

The Act does not allow for exclusion of individuals based upon fear, speculation, or stereotype about a particular disability or persons with disabilities in general. A determination that an individual poses a direct threat must rely on an individualized assessment that is based on reliable objective evidence (e.g., current conduct, or a recent history of overt acts). The assessment must consider: (1) the nature, duration, and severity of the risk of injury; (2) the probability that injury will actually occur; and (3) whether there are any reasonable accommodations that will eliminate the direct threat. Consequently, in evaluating a recent history of overt acts, a provider must take into account whether the individual has received intervening treatment or medication that has eliminated the direct threat (i.e., a significant risk of substantial harm). In such a situation, the provider may request that the individual document how the circumstances have changed so that he no longer poses a direct threat. A provider may also obtain satisfactory assurances that the individual will not pose a direct threat during the tenancy. The housing provider must have reliable, objective evidence that a person with a disability poses a direct threat before excluding him from housing on that basis.

The reasoning behind this requirement of substantiating a “direct threat” is to deter property owners from recklessly evicting residents with developmental, intellectual, or psychological disabilities based upon a perceived direct threat without any determination of actual or imminent harm.  Even if AIMCO had viewed his statements regarding a Japanese anime cartoon as a direct threat, the determination does not end at that point, and it would have not been a difficult inquiry for a housing provider to do.  For example, the subsequent owner, JMG Realty, conducted a proper inquiry by accepting medical proof from Ms. Hunt, interviewing employees, and reviewing Karl Hunt’s history, thereby allowing him to live at Reflections without any restrictions.

The trial court dismissed the Hunts’ case and the Hunts have now filed their appeal last week in the Eleventh Circuit Court of Appeals and are requesting that the court clarify the law that the mere allegation of a threat by a tenant, without any individualized assessment based on reliable objective evidence, is not sufficient to deny housing to a person with an intellectual disability and that AIMCO had a duty to honor the request for accommodation made by Ms. Hunt.

Karl and his favorite band, One Direction

Karl and his favorite band, One Direction

 

The Miami Foundation is having their 3rd annual Give Miami Day on November 20, 2014.  The event starts at midnight on November 20th and lasts for 24 hours. Disability Independence group will be a part of this amazing event.  Support DIG and join the movement.  http://givemiamiday.org/#npo/disability-independence-group-inc

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Book Review
Stay tuned for a book review by Lester Langer on Marc Marc Pulver standing at a podium at Books & BooksPulver’s first book. 
 
The Title is: Living Life with Autism – The World Through My Eyes. 
 
Marc was at Books & Books in Coral Gables on October 5, 2014. 
 
Marc is an eloquent speaker and would love to share his story with the world. 
 
If you would like more information about Marc and his book, please email Bob Shostak at rshostak@comcast.net.
 Book cover for the book -Living Life with Autism, the work through my eyes by Marc Pulver
The Miami Foundation is having their 3rd annual Give Miami Day on November 20, 2014.  The event starts at midnight on November 20th and lasts for 24 hours. Disability Independence group will be a part of this amazing event.  Support DIG and join the movement.  http://givemiamiday.org/#npo/disability-independence-group-inc

Know Your Legal Rights

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By: Matthew Dietz

On Saturday, September 20th, I had the opportunity to put on my professor hat and teach Criminal Procedure 101 to a very eager class of persons at the University of Miami. No, not for law students at the Law School, but instead for a class teens and young adults who have Autism and their parents.

A systemic problem in our community, and communities throughout the United States, is that police do not identify that certain behaviors of Autistic people are not indicative of criminal behavior. Disability Independence Group, UM/NSU Center for Autism and Related Disabilities and Lt. Bart Barta of the Coral Gables Police Department developed a program to assist both Autistic people to self-identify when encountering a police person, and the police in how to identify a person who may have Autism. The seminar is just one part of the program, and the other portion is a video that presents scenarios that may occur in police interactions and a wallet card that an Autistic person can use as a tool to self-identify to the police. For more information, please go to our website at www.justdigit.org

Shark Tank Update…

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By: Debbie Dietz  

We have finished filming the video and we are now in the editing stage.  The video looks amazing!  We want to thank all of our actors.  They did an amazing job.

You can order your own wallet card for free on our website at: http://www.justdigit.org/wallet-cards/.

Just fill out the online form and we will have them mailed to you within a week.  If you want to customize the card, please add the details in the comments section.

Autism CARES Act Renewed

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By: Deborah Dietz

President Obama signed the Autism CARES Act last month. The Autism Collaboration, Accountability, Research, Education, and Support Act of 2014, or Autism CARES Act, will reauthorize the Combating Autism Act for the next five years. The law will allow for $260 million annually for autism research, prevalence tracking, screening, professional training and other initiatives. The new law will also require that a point person be designated within the U.S. Department of Health and Human Services to oversee autism research, services, and support activities.

The Interagency Autism Coordinated Committee (IACC) will be expanded to include family members and self-advocates and there is a mandate to create a new report that focuses on the needs of young adults and youth during transition.

This is a very good news for the autism community. Stay tuned for more information in the future.

A note from Matt….

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By: Matthew Dietz

Part of the goal of Disability Independence Group is to prevent discrimination against persons with disabilities. This month, you will read about how we ensured how Cheylla Silva received interpreters for the emergency birth of her daughter, Zoey, and how we are working to ensure safe police interactions between Autistic people and the police. If you have any questions, please feel free to call us!