Arizona Jenkins, a 42-year-old who has cerebral palsy, has spent his adult life advocating for the rights of those with disabilities. When he heard about ABLE United, a unique savings account that would vastly expand his ability to save money without losing benefits, he took note.
As a wheelchair user with a robust social life and Tampa Bay Buccaneers games to watch, he is a master at using public transportation. He knows where and at what times that service disappoints people with disabilities. As part of his advocacy, he has guided the public transportation authority to place more shelters at bus stops, add lighting and boost van service.
As president and founder of New Horizons Support Group, he mentors children with disabilities and educates the able-bodied. His presence is a constant reminder of how individuals with disabilities can live independently with confidence.
He has even made a career out of advocacy. At the University of South Florida, he is a model patient for third-year medical students; helping future doctors learn how to better care for their patients.
But what to do with his earnings? It used to be the rule that people with disabilities couldn’t save substantial amounts of money without jeopardizing their federal benefits.
“Everyone has money put away for a rainy day,” he said. “I want to make sure that I’m able to take care of myself when I get old.”
He recalled the death of a friend, and how there was no money to bury him.
“When I die, I want to make sure everything is in place, that there are no bills to pay, that everything is taken care of,” he said. ABLE United is the vehicle he’s using to get there. “I want to put a lot of money in, and it’s there if you need it.”
Since launching the Faces of ABLE campaign last year, we have had the opportunity to highlight and celebrate the truly inspiring stories of the individuals who are making a difference at home and in their communities. In creating this campaign, it was our hope to highlight account holders and individuals within the disability community who deserve recognition for living, or helping others, live life to the fullest.
As we take a look back on the past year, we at ABLE United, want to say thank you to these every day heroes for sharing their stories.
January – Jen Pascarella
February – John Langan
March – Travis Foster
April – Judy Radford
May – Megan Fitzpatrick
June – Bobbi Wigand
July – Bridget and Shaun Hawk
August – Shaunna Rohletter
September – Sarah Sequenzia
October – Linda Bennett
November – Maisie Williams
December – Clare Anderson
There is no shortage of individuals and organizations working to make a difference in their lives, and the lives of others, every day – especially within the disability community.
To nominate a deserving individual, please share your nominations with Rachel at email@example.com.
I’m writing about ABLE United today from two points of view, both of which I hope you find to be helpful. First, as a certified public accountant, it’s my job to help clients make informed, prudent decisions about their finances. Second, I’m a parent to five children, including a son with Down syndrome. In that role, together with my wife, Juliana, it’s my privilege to seek ways to enrich all of our children’s lives in all the ways a parent can – that includes teaching our kids about money and making provisions for their future.
Early on, we decided one of those provisions would be a college education, and we purchased Florida Prepaid College Plans for four of our children. But while we are certainly not ruling out college for Owen, our 5-year-old who has Down syndrome, we wanted to save for his future in a commensurate but more flexible way.
Florida’s ABLE United account fit the bill perfectly. And I mean Florida’s, specifically. As someone whose job is to become familiar with codes, loopholes, and fresh fiscal opportunities, I considered the possibility of opening an ABLE account in another state. But after research, we settled on a Florida account, because the fee structure was far superior here than elsewhere. In fact, Florida’s ABLE United program has never required an enrollment fee and it was recently decided there will not be a monthly maintenance fee, either.
We contribute to Owen’s ABLE United account in the same manner in which we contribute into our other children’s Prepaid accounts. And while we’re on the subject of Prepaid, know that I take comfort in knowing that the Florida Prepaid College Board administers the ABLE United program. This longstanding Florida agency has proven itself to have strong controls and trustworthy oversight in managing extensive assets. Administrators are then able to leverage all of that money to get favorable terms for everyone.
How much should you contribute to an ABLE United account? As a CPA, I can tell you it’s wise to max out your contribution if that’s possible. Encourage family members to help you by making deposits instead of giving traditional gifts. This year, the maximum annual contribution is $14,000 (2017), and next year the maximum will rise to $15,000 (2018). Why contribute the max? You can’t go back in time. It’s like investing in a 401k. If you can’t contribute $18,000 this year, it’s not like next year you can contribute $36,000. The annual maximum is the maximum, and you’ll never get that time back.
Now as a parent, do I max out our ABLE United account for Owen? I wish! And you probably wish you could, too. But even if you can’t, I encourage you to do what we decided to do: something. Do something. Planning for the future is always important. So is not wasting time. The keys to success are the compound interest, the slow and steady, the long-term thinking.
When we make our monthly contribution into Owen’s account, we’re really thinking ahead to when he’s living independently, perhaps 20 years into the future. Just like we’re saving for our own retirement, this is like saving for him to have independence.
For him to have some control over his life. And we’re not waiting for a windfall to get started. We’re not waiting for the day that I get a big raise. We’re just saying, “This is what we can do now.”
The question is: What can you do now?
Scott Mattson is a CPA with Assurance Dimensions Certified Public Accountants in Jacksonville, Fla.
*This is a personal testimony and is not formal investment, tax, or legal advice.
Since the birth of her son, Steven, Clare Anderson has had to immerse herself in what it means to parent a special needs child. For that, she is grateful for the support of the Down Syndrome Association of Jacksonville and ABLE United.
At 4 years old, Steven, has developed a long list of favorite things: blowing bubbles, dancing, his Mommy and Me music class, going to Jacksonville Jaguars games, and playing his ukulele. To say that he is thriving would be an understatement.
When Steven was born, he needed immediate surgery for a stomach condition. And while his health has been clear since, his parents have had to immerse themselves in what it means to parent a special needs child. For that, they are grateful for the support of the Down Syndrome Association of Jacksonville.
“The Navy brought us here eight or nine years ago. We didn’t know why we were put here at the time, but looking back we know we were put here for Steven,” Clare said. “Especially with the passing of ABLE United.”
The Andersons first heard about ABLE United from the Down Syndrome Association when Steven was a baby, before the new program had begun. As soon as the accounts became reality, they signed up.
The Andersons continue to add money to the account — their own, and Steven’s birthday money. The account grows tax-free with no signup cost or monthly maintenance fee. Clare simply calls the account “a relief.” It’s something that makes it easier to enjoy the present with her little boy, even as she dreams about his future.
“I would say my dreams are just like any other mother’s,” she said. “I would like him to grow up and be happy. I would like to see him living on his own — even if I don’t want to admit that right now. Have a job. Live in his own way. Even if it’s just with his little ukulele.”
As much as we love the holiday season, let’s be honest: it can stress us out. Imagine, then, what the holidays can be like for our children with autism and sensory processing disorders. The lights, the sounds, the unfamiliar foods, the hugging of family members, the travel – it can be a lot to handle.
Preparation and patience will go a long way in helping you make the most of your holidays, even if that means exposure to some unfamiliar stimuli and disrupted routines for your child. At ABLE United, we have put together seven tips to help your family enjoy the holiday season:
1) Decorate slowly and sensibly. You might find it helpful to put the Christmas tree up one day and decorate it the next, for example. Build in time for your child to touch and handle decorations, and consider whether flashing lights and musical decorations belong in your decor.
2) Safeguard the most important routines. Disruptions are simply inevitable during the holiday season, so consider which routines are indispensable to your child. Maybe it’s breakfast and the usual bedtime; maybe it’s eating out of a favorite bowl that you need to remember to pack if you travel. It’s important to stick to those.
3) Prepare for what’s new. Some children with autism benefit greatly from visual supports, such as a calendar to help count down an upcoming event or photos of family members they haven’t seen in a while. Social stories may be of use — for example, a story that explains how family members who haven’t seen them in a while may want to hug and talk.
4) Remind your child how to open gifts. Consider all the unwritten rules about gift giving. Presents are not to be opened until an adult says it’s time. Children are to open only presents that have their name written on it; meanwhile, other children nearby will be opening gifts of their own. These presents might then be shared. Consider your child and how this might be best handled. And remind your child to say “thank you.”
5) Factor in new faces. Just as it helps to tell your child what to expect from others, talk to your friends and family about what they can expect from your child, and encourage them to lovingly prepare their own children. If you are taking your child to see Santa, discuss in advance what will be involved: waiting in line, telling Santa about a wish list, sitting in his lap (or standing at his side) for a picture, and smiling. Consider hosting holiday get-togethers at your home, where your child is most comfortable.
6) Don’t shop at the last minute. This isn’t fun for anyone, but especially not your child with autism. So be like Santa: make your list and check it twice, but not on Christmas Eve!
7) Give special consideration to traveling. It’s the ultimate disruptor of routines; on the other hand, it has the benefit of stretching your child’s flexibility! Pack wisely, choosing favorite toys, clothes and perhaps even foods. You might want to let your child pack and unpack his luggage to grow accustomed to the idea. If your child is prone to wandering, invest in an ID bracelet or tracking device, especially if you’re going to a large family gathering where your child could get lost in the hubbub. If you’re traveling by airplane, Autism Speaks put together this helpful resource.
Ultimately, you know your child better than anyone, so trust your instincts about when your child has had enough or when your child has more fun in store. Success is going to lie in finding your own family’s balance between enjoying holiday traditions and keeping life closer to normal, so give yourself the grace to say no when you know that enough is enough. And remember that no matter how hard you try, there will possibly be missteps. So forgive yourself and your child when they occur, and get back to enjoying a simpler holiday season!
What are you thankful for this holiday season? Here at ABLE United, we’re thankful for you! Even more, we’re thankful for your trust. Here’s why.
“Saving money” hasn’t always been easy for the disability community. Before the launch of ABLE United and programs like it across the United States, there was very little incentive for individuals with disabilities to save. On the contrary, there was so much to lose! An individual collecting Supplemental Security Income (SSI) or Medicaid could put those federal benefits at risk if they attempted to save money — specifically, anything over $2,000.
Fast forward to 2014, and passage of the Achieving a Better Life Experience (ABLE) Act allowing states to create their own ABLE programs. Some disability advocates called it a “game changer,” the most significant piece of legislation for individuals with disabilities since the Americans with Disabilities Act (ADA) of 1990.
Now, Floridians can save up to $15,000 a year in an ABLE United account and not risk losing eligibility for their disability benefits. The funds can be used on any number of qualified expenses, such as housing, healthcare, education, transportation, employment training, and other basic living expenses.
There is no cost to open an account and no monthly fee to maintain it. Furthermore, all earnings grow tax free.
The ability to save in this manner is brand new to the disability community, which is why we’re especially grateful for our more than 1,400 account holders who have contributed more than $5 million to their accounts.
In fact, you can read about how some current account holders are already making their savings work for them here.
From our team to you, thank you.
Maisie Cummings-Hamilton’s journey to becoming a special needs parent began in 1978, when she began to fight for her daughter, Nicole — and she hasn’t stopped since.
Maisie Cummings-Hamilton’s journey to becoming a special needs parent began in 1978, when she gave birth to twins three months prematurely. Her son died three days later; her daughter, weighing just 2.5 pounds, was soon diagnosed with hydrocephalus, which is a condition where there is an accumulation of fluid within the brain.
Both were terrible blows for the new mother, but Maisie immediately began to fight for her daughter, Nicole — and she hasn’t stopped since.
Doctors predicted Nicole would never walk or talk, but she proved them wrong – so much so that she graduated high school with a special diploma and then from Miami-Dade Community College with a certificate in customer service.
“I know I’m not going to be around for her for the rest of her life, but I’m trying to put things into place for her.”
Nicole is now 39, living with her mother and younger sister in Dade, Florida. She is a caring, social person who likes to volunteer, go to the movies, and spend time with friends. She really loves to go to work, but she faces difficulty finding long-term employment — something all too common in the special needs community. It’s just one of the reasons her mother was quick to open an ABLE United account when the opportunity arose.
“I know I’m not going to be around for her for the rest of her life, but I’m trying to put things into place for her,” Maisie said.
Maisie and Nicole keep broad goals in mind for the money they save: pay bills, learn to drive someday, stay trained for work. Maisie, who contributes each month via an automatic deduction, encourages everyone that’s eligible for an ABLE United account to open one.
“This is an amazing way to save income for her in case something happens,” she said. “I jumped on it.”
When Bridget and David Hawk helped their son, Shaun, open his ABLE United account, they didn’t have a dedicated purpose for the funds he’d save. They just knew that saving money was a smart thing to do. Obvious, even.
But Shaun had plans.
“Shaun always had a car in mind,” Bridget said with a laugh. “Shaun always wanted to buy a car from the time he got his driver’s license.”
And that’s just what he did. In September, the now-20-year-old bought a used black Mazda 3 that he had to save for himself, just like his mother did when she was a teen. His parents had gone to see him in Jacksonville, where he’s a sophomore at University of North Florida studying computer science and business technology. Bridget thought they were just going to have a family weekend visit, until they spent an entire Saturday at Carmax.
“It can be anything you want it to be.”
“It’s nice to see him happy,” Bridget said of her son, who has cerebral palsy. “He’s been so dependent on others. Taking the bus is tough. If he’s going food shopping, he can’t carry all those bags back. He gets to go to church now; he doesn’t have to count on other people for rides. Being independent has changed his life.”
The Hawks opened an ABLE United account for their son in July 2016, when the tax-free savings accounts “first came out,” she said. As the Special Olympics Florida director for Leon County, she frequently encounters people that are fearful to save because they don’t want to put their SSI benefits at risk.
“I see how the majority of them barely get by because they’re not allowed to keep any money, or they’ll get penalized,” she said. She knows some people spend money that they could otherwise save, just to avoid a reduction in their benefits. If they had an ABLE United account, they could save without that risk.
“My message to everyone that I run into is sometimes people are reluctant, and I don’t understand why,” she said. “It can be anything you want it to be.”
ABLE United account holders are able to build their own investment portfolios using money markets, bond funds, stock funds, and international stock funds. The only fees are the small percentages that are associated with the funds themselves, just like with any mutual fund. There is no enrollment or monthly maintenance fee.
ABLE United announced today that it has reduced its $2.50 monthly account fee to zero for both current and future enrollees. This is all part of ABLE United’s efforts to be the low cost leader of ABLE accounts for Florida residents. All the same great services and investment managers, including Vanguard and Blackrock, remain.
This exciting news makes opening an ABLE United account more affordable than ever. With no application fee and no monthly account fee, there’s even more incentive to start saving!
ABLE United, Florida’s authorized ABLE program, was made possible by the passing of the Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act, and allows individuals with disabilities to save up to $15,000 annually without affecting benefits like Supplemental Security Income and Medicaid. Funds grow tax free and can be used for a wide range of qualified expenses, including housing, medical services, education, transportation, and even basic living expenses.
Florida was one of the first states in the nation to launch a qualified ABLE program, and in just over one year, more than 1,300 Floridians with disabilities have opened an account and started to save for their better life experience. The program now has more than $5 million in combined investments from participants.
Change the conversation about Down syndrome this month.
October is Down Syndrome Awareness Month, which makes my life right now a little overwhelming, but also very rewarding. As the mother of a 30-year-old son with Down syndrome and executive director of the Down Syndrome Association of Jacksonville, every day is an awareness day for me. But for our community and nation at large, October gives us the opportunity to all speak with a common voice, and that raises the volume on our important message. What a platform!
I’ll never forget the messages I first heard about Down syndrome. In the hospital with my precious newborn, my husband and I were handed medical information that was outdated and scant on hope. We heard chatter about “institutions,” “life expectancy,” and, yes, even the word “Mongoloid.” We left that hospital with the message that we could take our baby home and love him, but beyond that, who knew? We were on our own.
As new parents, we were desperate to learn more, and in time we found other parents who shared our zeal. Together, we formed the Down Syndrome Association of Jacksonville, and in our 28 years, we’ve gathered new information and forged new opportunities. Our biggest day to advocate, educate and raise funds is coming up soon: The 15th Annual Buddy Walk will happen on the beach on Nov. 4. We’re expecting about 4,000 people to be involved, exposing attendees to Down syndrome in a celebratory fashion. The money we raise helps fund physical, speech and occupational therapies, in addition to our new paid internship program that aims to help people with Down syndrome build office skills into their resumes.
We left that hospital with the message that we could take our baby home and love him, but beyond that, who knew? We were on our own.
How about you? What if you don’t live in Jacksonville? If your community doesn’t have a Buddy Walk to enjoy, you can still celebrate Down Syndrome Awareness Month. Consider the power of social media. It’s free, and it’s impactful. What does Down syndrome mean in your life? Tell people. This can be so much more meaningful than facts or statistics. You may never know how much sharing your personal story will touch people.
We’re proud to be changing the conversation about life with Down syndrome. Specifically, our agency now provides updated information for distribution at Jacksonville area hospitals, so that parents of newborns with Down syndrome are given a more truthful, hopeful message, and they’re immediately welcomed into our community of active support.
The odds were against my son, Nicholas, ever living on his own, having a job, or having a girlfriend — but now he has all three. Life may not look the same for him as it does for his brothers, but it’s his and we couldn’t be more proud.
So get onto social media, go to a Buddy Walk, push for early therapeutic interventions and advocate for job opportunities for our loved ones with Down syndrome. This October, and all throughout the year.
Debbie Revels is executive director of the Down Syndrome Association of Jacksonville and an ABLE United partner.