Olivia and her twin sister, Adrianna, were born five weeks early, each weighing a little more than five pounds and no indication of disability. It wasn’t until Olivia was four months old that her parents, Tara and Jason, realized something wasn’t right.
The prognosis continued to be unclear until she was 18 months old and was formally diagnosed with cerebral palsy.
While Olivia has faced challenges over the years, now at the age of 21, she is a vibrant and passionate young woman. “She is almost always smiling,” said her mother, Tara. She loves music, planning her schedule, cooking with family – and most importantly, theater.
In 2017, the family learned about ABLE United from an organization called Let’s Cure CP.
“As I researched this amazing savings plan, I knew that it was an opportunity to invest for Olivia’s future life expenses,” explained Tara.
Today, Tara helps Olivia manage her finances and she deposits a portion of her monthly SSI income into her ABLE United account. They primarily use her account for saving for the future but have withdrawn money for items such as furniture for her apartment, as well as therapy.
“I opened her account on her behalf, so that she is able to save and invest, simply and cost effectively, with little maintenance or fees,” shared Tara, who recently became an ABLE United Brand Ambassador.
Her mother also shared, “My hope is that this account will continue to grow over the years, as well as give her flexibility and peace of mind as she lives her best life!”
At 15-years-old, Sean is as big as a star.
He has been active in different activities over the years, but his real passion is singing and dancing. He has been in a many musicals and plays where he has memorized lyrics, choreography and speaking parts. His mother, Michelle, explains, “Sean brings great joy to those around him, whether he’s performing or simply by talking to a new acquaintance.”
“I first learned about ABLE United from a friend, but it wasn’t until I attended Family Café that I really got to understand the benefits of having an account,” said Michelle.
Currently, the family is using Sean’s account as a tax-free option to save for his future, but they are also planning to use it alongside his Special Needs Trust. “Sean’s ABLE United account allows us to pay for some items that he can’t with his trust – we’ve found that they work together nicely.”
Most importantly, his account will allow him to save his own money without jeopardizing his benefits that help cover medical services.
“Sean has great potential to live a fulfilling life in the future with help from family, friends and his ABLE United account,” said Michelle.
At five years old, Natalie has proven to be a brave little warrior time and time again. At just two weeks old she was diagnosed with sickle cell anemia – hemoglobin SS (HbSS), the most severe type of sickle cell. Natalie’s first blood transfusion was July 2014, a few months shy of her first birthday. To date, she’s had nearly 40 transfusions with a dozen hospitalizations (including a surgery to have her spleen removed).
“Being a mother to a child with sickle cell anemia is the most difficult job in the world,” said Jessica. “There are many sleepless nights from pain and fever and trying to manage symptoms at home to avoid another hospitalization. The worst feeling in the world for any mother is the feeling of helplessness experienced when you cannot help your child.”
Jessica first heard about ABLE United through her past work experience as a waiver support coordinator with the Agency for Persons with Disability.
“I loved the idea of being able to save money for Natalie’s future and not lose our benefits,” she explained.
“Our ABLE United account allows us to have a “rainy day” fund because when Natalie gets sick and is hospitalized as she was this past week, I miss out on work. But, thanks to her ABLE United account, we are still able to ensure that the bills are paid.”
In her spare time, Jessica works to advocate on behalf of her daughter by speaking to other parents who have children with different variations of sickle cell, as well as turning to social media to help raise awareness for the need of advanced research.
Earlier this year, Jessica also became an ABLE United brand ambassador to share with other parents and caregivers the benefits of an account.
“My hope for Natalie’s future is that she is able to save with ABLE United and be able to go to college and pursue whatever career she wants,” she said. “Her current dream is to be a pediatrician when she grows up!”
When you ask Samantha Short what she’s most excited about right now – her answer is becoming a “dog mom” this upcoming May. The Miniature Goldendoodle will be trained as a service dog to help detect seizures due to her epilepsy diagnosis.
“Sam has been able to live independently over the past year and a half thanks to ABLE United,” said her mother, Tracey. “We’ve been saving since the day we opened her account for her first house – one with a big yard so her service dog has plenty of room to run and play.”
In 2018, Samantha passed the Florida childcare training requirements in order to receive her Child Development Associate credential and obtain a job with a childcare facility in her hometown of Clearwater.
“My biggest wish for her is that she will have the opportunity to obtain all of the life skills she needs for independence,” said Tracey. “But most of all, happiness.”
Most recently, she is training to be a certified dog walker at the Humane Society and also works at their Holiday Kid’s Camps where she educates children on proper animal care and handling – all of which provide a paycheck that gets deposited into her ABLE account.
“Each penny saved is a penny earned,” Tracey explained.
Due to Samantha’s seizures, she’s unable to drive a car, so the Short family is also putting money away to buy a golf cart.
ABLE United provides options no matter what Gunner’s future holds
Gunner Brandt is a happy, spirited young boy who loves the outdoors – and as a South Florida native that includes being in or on the water. Diagnosed with autism at the age of three, and more recently with speech apraxia, Gunner does not let his limited verbal communication skills impact how he shows his affection and appreciation for those that help him throughout his day.
“He wakes up with a smile on his face and jumps on the bed – excited for the day,” says Phoebe St. Germain Fellows, Gunner’s mother and an ABLE United brand ambassador. Gunner’s enthusiasm for life is contagious.
Prior to the launch of ABLE United, Fellows attended a workshop at Nova Southeastern University’s Miami campus where she was introduced to the program that would allow her to begin saving tax-free for her son’s future.
“I am grateful that ABLE United exists not just for my son, but for all Floridians,” said Fellows. “My mother has been in the finance industry for years, and we had struggled to find a solution given the limitations he may face with a special needs trust and also his college savings account that we had opened for him when he was born.”
“Like all parents, my hope is that my son is able to live a happy and healthy life – and that he has the opportunity to work independently and save his money as I believe individuals with disabilities can make a real impact when they are encouraged to work in fields that they love,” Phoebe St. Germain Fellows
Every day, ABLE United works to provide individuals with disabilities the opportunity to save for a better life experience, and Fellows and her family continue to add funds to Gunner’s account on a yearly basis.
In the future, account holders will have options – no matter what their future holds. New enhancements to ABLE United accounts include the ABLE to Work integration, which allows a beneficiary who is working and not contributing to a retirement plan, the ability to contribute above the $15,000 annual maximum contribution limit.
Pat Smith first heard about ABLE United prior to the program officially launching in Florida, but needed a better understanding of how an account worked and how it could benefit her daughter, Ashley.
“We attended Family Café a few weeks before ABLE United launched, so I came prepared with my questions,” said Smith. “I attended a couple of break-out sessions, got my questions answered and as soon as the program was made available, I opened up Ashley’s account.”
Born with cerebral palsy, specialists told Smith that her newborn daughter wouldn’t live past the age of two. Now, 29, Ashley is a vibrant young woman who loves to read and make up stories of her own.
She is an active member of St. Lucie County Special Olympics where she participates in a variety of sporting events – equestrian and bowling being among her favorites. Ashley also attends The Arc of St. Lucie County Day program.
Specialists told Smith that her newborn daughter wouldn’t live past the age of two. Now, 29, Ashley is a vibrant young woman who loves to read and make up stories of her own.
Smith calls her daughter’s ABLE account a blessing and continues to add money to it — her own each month, and Ashley’s birthday and Christmas money. In addition, she was recently named as one of three winners from this year’s Family Café giveaway receiving a $150 contribution to her account.
Her account continues to grow tax-free and now with the hope that individuals on Medicaid, just like her, will not be subject to recovery of funds. Smith shared that it would be “a game changer for our family.”
The removal of Medicaid recovery from ABLE United accounts is in effect from July 2018 to June 2019. It will be a priority to introduce legislation in the 2019 session to make this a permanent change.
When Christinne Rudd was a little girl, doctors told her mother she would never be able to walk because of her cerebral palsy.
Years later, when she was expecting, a nurse told her she wouldn’t ever be able to hold her son in her arms, because one arm didn’t “work.”
That son is 6 now, and Rudd — who walks with a cane after many surgeries — can still pick him up when she wants. She has spent a lifetime correcting wrong assumptions about how cerebral palsy and other disabilities affect people’s lives, to the point that it has become a profession. She blogs, writes articles and has served as an informative and motivational speaker at events such as the Independence Expo for United Spinal Association and Family Cafe. She’s also an adviser to the Orlando chapter of Florida Self-Advocates Network’d and serves as a board member and treasurer for FAAST.
“I try to keep up on the resources available in the disability community and pass them along when I can,” she said.
One of her favorite resources is the ABLE United account. She chose to save her funds there instead of in a special needs trust, after researching both and finding ABLE United to be more flexible and much less expensive.
“I like that I’m able to monitor it and am able to choose what happens to the money,” she said.
Because ABLE United accounts are still fairly new, she has educated various people who fear loss of benefits and aren’t aware of this new avenue of savings. Before this option was available, people with disabilities had no way to “save for a rainy day.”
“People have been conditioned to think that they can’t save anything,” she said. “Luckily, that isn’t the case anymore.”
Rudd has advocated for improving healthcare relationships between doctors and their patients who have disabilities. She has given speeches to disabled parents who are raising children and taught them how to become self-advocates. When she’s offered the chance to tell someone about ABLE United, she seizes that opportunity, too.
“I think that ABLE United brings something to the table, something very valuable, and I don’t think enough people know about it.”
Kevin Sass loves to use some of his small paycheck to buy movies on DVD – he’s a Mr. Ed, Andy Griffith and Disney kind of guy. He also loves to bowl, and he’s pretty good at it, too.
But one thing his mother really appreciates about Kevin is how faithfully he buys birthday cards for his cousins, aunts and uncles, whose birth dates he has memorized.
“We call him Mr. Calendar, because he knows what’s going on. He keeps me straight,” said Kathy Smith, who lives with her husband and Kevin in The Villages. “And he picks out the best cards; he’s so thoughtful in that way. He’s a joy, he really is.”
Kevin, who recently turned 40, has had a developmental disability since birth, when his umbilical cord was pinched and he didn’t get enough oxygen.
“He just doesn’t catch on to stuff, especially money,” Smith said. “We’ve been working on that for probably 35 years.”
Fortunately, Kevin’s mother knows a smart money move when she sees one – like Kevin’s ABLE United account. Through ABLE United, Floridians with disabilities can enroll in a tax-free savings and investment account without negatively impacting their government benefits.
“Growing up, we always were taught you give some to church, you put some into savings and you could spend the rest. That was just a part of it – you saved,” she said. That message used to be a frustrating one for people with disabilities who feared losing their benefits.
With the dawn of ABLE United accounts, Smith knew she should open an account for Kevin, but she didn’t right away. “I was thinking about it for a long time, but it’s like so many things: You just kind of put it off. You don’t sit down and do it,” she said.
Until, she heard about an upcoming drawing where one new account holder would win $1,000. Kathy thought, “Well for Pete’s sakes, I’m going to go ahead and do it. I’m not a lucky person, so when we won it, we were shocked!”
Kevin’s account is funded now with that $1,000 sweepstakes contribution, plus some inheritance money from his grandparents. Smith hopes to add to it in the future. They don’t have plans to spend it yet; in the meantime, it’s earning interest and is available in case of an emergency.
If you ever run into Elliott Paine, chances are you’re doing something really, really cool.
The 22-year-old might be out kayaking with the alligators near his hometown of Palm Bay. He might be wailing on a drum kit, head bobbing and channeling some Guns N’ Roses. He might be practicing for his upcoming DJ gig at a graduation party. Or if it’s a Wednesday night, he’ll be at improv class.
“It makes me feel great inside,” Elliott says of improv. “it makes me feel good about myself. I feel kind of like — welcomed.”
Elliott was born prematurely at 32 weeks; due to oxygen deprivation and seizures at birth, he has epilepsy and some learning disability. His mom, Sandi Paine, enrolled Elliott a couple years ago in a beginner improv group and watched his confidence blossom in a setting that was fast-paced yet nurturing. She wanted to spread that opportunity to other children and adults with cognitive disabilities, so she founded an improv nonprofit group called Blast Off Performing Arts. Now, Elliott helps his mom teach on Tuesdays.
Despite a plethora of enviable hobbies, Elliott does make time for work, too. He participates in a job training program, where his favorite job is picking up IV pumps at the local hospital. Work is one important step toward his eventual independence; another, Sandi says, is his ABLE United account. She saves there for Elliott’s “future-future needs,” knowing he can grow assets without jeopardizing his federal disability benefits.
“I always had so much resentment. It wasn’t enough to be disabled in America, you also had to be poor,” she said. “When this vehicle came around, how could you not do it? It’s a no-brainer.”
Sandi said that her only regret about ABLE United is that they don’t make enough money to max out his contributions every year. “But we will someday,” she said. “I tell everybody about ABLE United. You’d be amazed at how many people still don’t know about it. It’s a great program, and I’m really grateful to have it.”
Catherine Davey, a longtime estate planning probate lawyer and expert on special needs trusts in Maitland, has combined her decades of career experience with her personal passion to advocate for and educate the disability community.
Catherine Davey and her husband had two little girls and wanted a third child to complete their family, but it just didn’t seem possible. Three times, Davey conceived; three times, she lost the pregnancy. Her best friend, an ob/gyn, performed a blood test and delivered the news that Davey could not have any more children.
Until Davey discovered she was pregnant.
“Then we got the hard news. It was bad news — at first,” she said, describing the blood tests and then the amniocentesis that confirmed their daughter had Down syndrome. “At first, I was like, ‘God, I don’t understand. This is our miracle child. How could you do this?’ And then our little girl was born.”
The Daveys named her Mae, after a beloved aunt who was “a fireball. We knew Mae would need it.” Their sweet daughter is now 4 years old, and is “stinking cute, amazing and smart. People tell us all the time, ‘She’s so lucky to have you.’ We’re like, ‘No, you don’t understand. We’re lucky to have her.’”
As it turns out, young Mae isn’t the only fireball in the family. Catherine Davey, a longtime estate planning probate lawyer and expert on special needs trusts in Maitland, has combined her decades of career experience with her personal passion to advocate for and educate the disability community. Every six months, she hosts Low Down on Law, an expert-led forum on legal and financial issues such as estate planning, probate, guardianship, Social Security, and ABLE United.
It took her a while to warm up to that last one, until she understood how useful an ABLE United account can be as a tool in a person’s financial toolbelt.
In essence, she said, the special needs trust can put funds into an ABLE United account for use toward support and health expenses. That way, it doesn’t count as income against the individual, and the individual keeps their Medicaid and SSI benefits. And, she adds, it’s easy and fast to open an account online.
Davey, who has political connections and serves on a number of active committees, says she will keep pressing for equal rights and better opportunities for the disability community. She has always pressed these platforms, but with Mae’s birth, she said, she went “all in.”
“Now I have to change it,” she said, “and I’m changing it for her. I’m not changing it for you; I’m changing it for her. But I have really big coattails. And I’m bringing everyone along with us.”