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 They primarily use her account for saving for the future but have withdrawn money for items such as furniture for her apartment, as well as therapy.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!”
Samantha, a 32-year-old with cerebral palsy, devotes her time to advocating on behalf of others with disabilities and making meaningful connections with non-profit organizations in Tampa that foster this community’s independence.
She is currently involved with three organizations, including Self Reliance, a Center for Independent Living. The center focuses on teaching life skills that are necessary for youth transitioning out of high school to live independently in their community just like Samantha did.
She is also involved with The Grow Group and All People’s Life Center. In her spare time, she participates in adaptive sports, including: golf, waterskiing, para-badminton, kayaking and will be starting archery soon.
“Most of these sports I plan on playing competitively on a paralympic level in the near future,” she said.
Samantha’s most recent role is as an ABLE United Brand Ambassador where she shares with others how ABLE United has helped her achieve a better life experience.
“My disability benefits are just not enough to cover all living expenses, let alone ones related to a disability. When I first opened an ABLE United account, it was only meant to be a savings account,” she shared. “The plan was to deposit 10 percent of every paycheck automatically – I didn’t want it to be an account that was used frequently to pay for everyday expenses.”
But that changed as less than a year after Samantha opened her account, her health declined unexpectedly. Through her extensive search for resources that would assist her with daily living activities, she soon realized how important Medicaid was as unexpected doctor visits and hospital admissions were becoming the new “normal”.
“Retaining my Medicaid is essential to my health and can be a matter of life or death. The new purpose for my ABLE United account is to deposit all my wages once I return to the workforce within the next few months,” Samantha said. “For that to be possible a Smart Drive wheelchair and other assistive technologies must be purchased, as well as a wheelchair accessible van and its conversion.”
These “big ticket” items will make it possible for her to live a productive and independent life. “Having an ABLE United account makes this all possible,” she explained.
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.
Thank you for all those who stopped by our booth or attended our break out sessions. Below you will find the presentations given at The Family Cafe 2019.
We are excited to be participating in the Annual Family Café for the fourth consecutive year!
Do you have questions about ABLE United? Are you interested in opening an account?
Stop by our booth on Friday and Saturday during exhibit hours to meet with one of our representatives. But, wait, it gets better: we will be onsite helping to enroll qualified individuals into their accounts!
Besides packing some clothes and toiletries, here’s what you’ll need to bring to start an ABLE United account:
- Valid Email address
- Personal identifying information for account owner, and if necessary, Authorized Legal Representative:
- Name, Address, Date of Birth
- Social Security Number
- Category of disability with onset before age 26 – we will provide category descriptions in the application to guide you
- Relationship to beneficiary
We hope to see you there!
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 opportunity for young woman to give back to community
At the age of 18, Faith-Christina Duncan is proof that individuals with disabilities can succeed – she is not only an ambassador with the Best Buddies program in Central Florida, but also plays an important role with the Down Syndrome Association’s local chapter. For more than five years, she has made and donated baby blankets and burp cloths for parents with newborn babies who have been diagnosed with Down syndrome.
“This gives the parents hope of what their child can and will do in the future,” said Nancy-Carole Duncan, Faith-Christina’s mother. “We utilize her ABLE United account to save funds, so she can continue to purchase fabric and materials for these endeavors that she is so passionate about.”
Faith-Christina’s work is also on display on the walls of the Best Buddies Orlando and the Down Syndrome of Central Florida offices.
“We utilize her ABLE United account to save funds, so she can continue to purchase fabric and materials for these endeavors that she is so passionate about.”
In addition to saving for her passion projects, she is using her ABLE account to save for the future, so she can live independently of her parents. In May, she will graduate from high school and plans to attend Valencia College, where she hopes to receive her Bachelor of Science degree in American Sign Language.
“Attending college also comes with a price,” said Nancy-Carole. “We continue to put money into her ABLE account and watch it grow tax-free.”
The Duncans plan to utilize funds saved in the account to pay for their daughter’s college tuition and books.
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.”