At ABLE United, we’re thankful for our account holders – and also for the significant strides made this year that make it easier than ever to save for their futures.
Removal of Medicaid Recovery
The Florida legislature took the first steps to amend Florida ABLE statutes and remove Medicaid recovery from ABLE United accounts. The implementing bill clarifies that any remaining funds in an ABLE account must first be distributed for qualified disability expenses then transferred to the estate of the designated beneficiary. Additionally, Florida’s Medicaid program may not file a claim for Medicaid recovery of funds in an ABLE account.
These changes will be in effect until June 2019. The hope is that legislation introduced in the 2019 session will make this change permanent.
529 College Saving Rollovers
Thanks to the Tax Cuts and Jobs Act signed into law last year, families can rollover funds from a 529 college savings account into an ABLE account. Families who were saving for higher education expenses for their child with a disability now have the opportunity to rollover funds to an ABLE account – although, these types of rollovers do count towards the $15,000 annual maximum contribution limit.
So, if there is a remaining balance in the 529 college savings account after completing this rollover, we encourage you to take advantage of initiating another rollover each calendar year.
As the year winds down, it’s important to start planning your final contributions for 2018 – account holders can contribute a total of $15,000 to their accounts this calendar year. The contribution limit will then reset on January 1, 2019, which allows the opportunity to save up to $15,000 next year.
We look forward to all that’s in store for the future and introducing our account enhancements in the coming weeks.
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.
Parents generally expect to die before their children do; they find the opposite almost unthinkable. But consider parents of certain children with disabilities — children that require nuanced and abundant personal care, children that will never be able to live independently. For these parents, the thought of their child outliving them can bring out feelings of fear and legitimate concern.
Whom can I trust to take care of my child as well as I do, these parents ask? Who is selfless and caring enough to take on this huge job? And who is responsible and savvy enough to manage the administrative concerns, such as benefits paperwork and financial details?
As a special needs attorney, I constantly talk to parents who are dealing with these questions. I know that many more won’t yet come to my door because they don’t have the answers. I would remind such parents that they are not alone. Even parents of typical children put off drafting a will because they struggle to officially name that guardian. After all, nobody trusts anyone to take care of their children as well as they do.
It’s especially important for parents of children with disabilities to grapple with these questions, partially because they often need to get creative about a solution. In general, there are fewer potential caregivers these days. Families are smaller than they used to be, meaning there might not be a sibling, or even an aunt or uncle, that could serve as a caregiver. Potential caregivers that do exist may have moved out of town. Not only are their roots planted elsewhere, they also haven’t witnessed what day-in, day-out care really looks like lately. Even finding a church friend is a dwindling option, as church membership rates decline.
When there is a sibling that is truly ready to step in, it’s a wonderful solution. If not, parents need to get inventive. First, recognize there are two aspects to caring for your child: the personal care and the administrative care. Your child might have a sibling who would be wonderful at personal care — changing bedsheets, feeding, and generally providing a home — but who can’t manage a checkbook. Or that sibling might be a personal finance whiz but lacking in personal support skills. In these cases, it is possible and preferable to divide the duties.
This role-sharing approach can have some added benefits. Say, for example, you set aside funds for the care of your child and stipulate that remaining funds will be inherited by your designated caregiver. Do you see how that can turn into a conflict of interest? If you set up a special needs trust that names one individual as a caregiver and another individual as a trustee over the funds, that conflict can be avoided. One sibling could be the caregiver; the trustee (or co-trustee) could be a different sibling, a trusted friend, a nonprofit association, or possibly a bank (although banks typically require $1 million or more).
Some thoughts to consider as you go forward:
If you’re eligible for an ABLE United account, get one. It makes the financial administration piece so much easier. In fact, we use ABLE accounts in combination with every special needs trust we create where the beneficiary is eligible (onset of disability before age 26). It’s a convenient conduit for funds: Instead of the caregiver needing to go to the trustee for small expenses — a $25 fee for a weekend day camp, for example — the caregiver can use the ABLE account. Also, when household and food costs are paid for straight from a special needs trust, Supplemental Security Income (SSI) checks can be reduced by one-third. If funds for those household expenses are passed from the trust into an ABLE account and paid from there, there is no reduction in SSI.
Even without a special needs trust, an ABLE account is highly useful because of its returns and its tax-favored status. If a family of relatively small means can save even $20 a week in an ABLE account, they’re going to see returns so much better than they would in a savings account earning 1 percent interest. Save early; save often; save consistently.
Consider ways to create financial resources. Long-term care of a person with a disability can be tremendously expensive. In addition to working robustly and saving robustly (both in your 401k and your ABLE accounts), you might try to explore the possibility of raising private funds through life insurance. Look into what’s called a “second to die” life insurance policy. When the first parent dies, it pays nothing, but when the second parent dies, it pays. For the same premium, the payoff might be $500,000 instead of $100,000.
Seek federal benefits when the child turns 18. Even if you are of means and don’t want to apply for your child to receive federal benefits – you should. When a parent retires and files for Social Security, their child can also receive benefits as a DAC, or “disabled adult child.” DAC benefits may provide a surviving adult child up to 75 percent of the parent’s Social Security retirement or disability check, often reaching $1,500 or more, and consistently above the maximum SSI check of only $750 per month. Proving eligibility is the trick. If you haven’t kept school and medical records — which we recommend you do, and treat them like gold — this can be difficult! If you apply and your child is eligible for Supplemental Security Income (SSI) when your child turns 18, since medical criteria are the same as those to prove DAC eligibility, no one will have to go digging for records. Furthermore, DAC eligibility triggers Medicare, which is taken by 96 percent of doctors and has no lifetime limits. In addition, the adult child continues to be eligible for SSI under a special federal law.
Keep in mind this general checklist, and reconsider it as needed.
- Draw up a will.
- Create financial resources.
- Determine what potential public resources exist and how to position yourself and child to get maximum use of resources.
- Name a future guardian.
- Create a financial management plan.
Get informed. If you’re not yet ready to consult a special needs attorney, be on the lookout for a free seminar at your child’s school or through a local advocacy group. Navigating this world can be complicated, but not to those who deal with it every day. Learn as much as you can, as early as you can, from those in the know, and you can best position all of your children for a bright future.
David Lillesand is a special needs attorney with offices in Miami and Clearwater. Learn more at https://www.floridaspecialneedslaw.com.
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.”
We are so excited to be on-site at Family Café again this year – and with an expanded booth!
Join us June 15-17 at The Family Cafe in Orlando. Representatives will be available to answer all your questions on how to start saving money without risking the loss of government benefits.
Stop by our booth on Friday, June 15 or Saturday, June 16 during exhibit hours to enroll in an ABLE United account and learn how you can receive a $25 contribution to help you get on your way to saving for a better life experience!
Here’s what you’ll need to open an ABLE United account at the event:
- 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
- Selection of at least one savings or investment option
You may also need:
- Banking information if you would like to make an electronic contribution with the application
- Date of diagnosis with name and address of the treating physician if certifying the individual’s disability eligibility based on a physician’s diagnosis
You can also get your questions answered at two separate break-out sessions, including:
ABLE United: The Basics on ABLE Accounts
Friday, June 15 – Bayhill 23
4:30 – 5:30 p.m.
ABLE United: The Basics on ABLE Accounts 2.0
Saturday, June 16 – Bayhill 23
11:00 a.m. – 12:00 p.m.
We’ll also have a photobooth with Superman and Supergirl and a Spin to Win Wheel – fun for the whole family!
When Amanda Baker was an undergraduate at Florida State University Panama City, she used to have weekly meetings with the dean — two of them, actually. One dean in his office, the other on speakerphone. But she was never in trouble. She was the trouble.
“I had a set day that I went in there. He’d put the dean of the Tallahassee campus on the phone and say, ‘I have Ms. Baker here. Do you mind telling her — again — why she can’t have her bathroom?’”
Baker, who has cerebral palsy, uses a wheelchair that was too big to fit into the minimally ADA-compliant stall of the building where she took classes. To access the usable restroom, she needed to exit the building entirely. It was inconvenient, frustrating and familiar: In high school, she could only use a particular toilet inside a storage closet.
Finally, in her last semester, Baker watched construction crews revamp the bathrooms to accommodate her and future students like her. She graduated with a degree in communications, which she has since put to good use.
“I’m really heavily involved in a lot of advocacy work,” said Baker, who is vice chair of the Florida Developmental Disability Council and president of Florida Self-Advocates Network’d, better known as FL SAND. “Because I’ve lived through this myself, I’ve wanted to be able to help other people.”
The 37-year-old works for a state agency that helps people with disabilities find and maintain employment. She was so grateful to get the job two years ago that she drove her wheelchair to get there: four miles in each direction through the Panama City heat, and sometimes rain.
“I’ve worked in wet clothes,” she said. “I got hit by a van and I still went to work! I worked so hard to get this job and I was not going to lose it.”
She has subsequently gained access to transportation services that take her to work and home again, but that really isn’t enough for such an active person.
“I’m really heavily involved in a lot of advocacy work…because I’ve lived through this myself, I’ve wanted to be able to help other people.”
“I can’t go to the store when I want or go out with my friends and do anything like that,” she said. Traveling for advocacy work has become more challenging, too. Security screenings are intrusive, and airlines are raising the premium for seats with the leg room her condition requires.
“It’s really getting more difficult; it’s part of why I want a wheelchair van so badly,” she said. “I just really want to be able to go where I want to go when I want to go.”
Her dream of having a wheelchair van is why she opened an ABLE United account. The money she puts into it will grow tax-free and won’t harm her eligibility for the Medicaid services she needs to help her get bathed and dressed, and to help get meals prepared.
Baker plans to start her own business soon as an analyst for others with disabilities. In addition to being a disability consultant and speaker, she’ll prepare reports for people with disabilities that want to work but need to thread the needle to maintain their benefits.
Her goal is to make enough money that she can get off of Medicaid, at which point she could really ramp up her ABLE account contributions.
“All I want — all l ever wanted — was the equal chance to make my way in the world,” she said.
In the special needs community, we, as parents, count on each other. We talk in lobbies and waiting rooms, we share names of helpful therapists, and sometimes we even cry on each other’s shoulders. In 14 years of parenting my autistic son, I’ve certainly done all of those things. But as a former social worker, I also find myself applying skills I used professionally to our personal lives. It’s helping us get better outcomes for our son and our whole family.
For all these reasons, I wanted to offer some tips I’ve learned along my journey, and I hope that they will help you along on yours.
Take a case manager attitude. Your child will have some wonderful doctors and therapists, but let’s face it: They’re not going to be there in the long run; you will. One way to advocate for your child is to keep track of their records: educational, legal, medical. That requires an organizational skillset that will come with practice. To get you started, try to find a parent training through your special needs resources, or take a class in case management.
Build your child’s medical file and bring it to appointments. If we go to a new doctor and they say, ‘We’ll have to get his records,” I don’t want them to have to wait. I have a portable thumb drive I can give to new doctors and a huge folder I keep at home. Keep a master list of which medications your child has tried, with dates and any reactions. I also have a document scanning app on my phone; I scan papers right in the doctor’s office and send them to an email address I set up for my son so that everything is kept digitally. It’s never too late to start this project; your pharmacy might be a quick resource to start a previous medications list, for example. Just start wherever you are, working backward as you work forward.
Go to the Family Cafe If you haven’t heard of it, it’s a huge disability conference held annually in Orlando, where those who have a disability are welcome — and I emphasize they feel welcome. It was so nice to gather information (even how to deduct specialty diet foods as a medical expense); plus if my son acted out, no one stared!
For those who are unable to attend, most of the presenters will post their PowerPoints or contact information on the Family Cafe site so that you can request their slides by email. Conference sessions include everything from parent empowerment to “sibshops” — workshops to help a brother or sister better understand their sibling’s diagnosis and how they can help.
Open an ABLE United account. I hear the same thing over and over, that having money will cause someone to get kicked out of their benefits. That’s not the case anymore and more people need to be aware! I am so grateful this has become available and legitimately circumvents that issue.
Don’t settle for the first answer. Doctors initially struggled to diagnose my child and at first listed him as having “bipolar disorder and/or Asperger’s.” Medications were inadequate, services were limited, school settings were toxic — it was a nightmare. But as I continued to observe my son and give feedback to doctors, they changed his diagnosis to autism spectrum disorder. It was amazing! Doors just started opening. So find another place, keep going, and do your own homework.
Practice self-care (but don’t use me as your example). I can list a ton of advice about self-care but that would be hypocrisy in the making! I will say that I’ve found a local church that takes special needs kids for a few hours once a month; if you can find something like that, by all means, take advantage. (I do.) I started exercising at a boot camp, and I can tell you there is nothing more therapeutic than taking one of those 20-pound medicine balls and throwing it on the ground. I also don’t watch the news; I’ve got enough negatives on my plate and try to avoid as many additional downers as possible.
Think creatively about your particular situation. Your unique problems will require your own unique answers. For example, I noticed huge improvements in my son’s behaviors after revising his diet. We cut out all food dyes and it made a remarkable difference. (If you, too, find Halloween and Easter challenging, check out naturalcandystore.com.) We also put keypad locks on our bedroom and pantry doors. That might sound extreme, but special needs parents understand the need to keep both their special needs child and uninformed guests away from certain foods and powerful medications. Don’t be afraid to experiment, keeping what works for you and abandoning the rest.
Talk, listen, research, repeat. Engage with other parents wherever you find them. I value our doctors, but I don’t think they always “get it” unless they also have a child with special needs. Get on Google, go to resource centers, join several Facebook groups. If I have a question about my son’s IEP, I can post it online. I’ll get some good information as well as some bad information that I have to filter out, but at least it’s other viewpoints.
Pick your battles and strike your balance. I used to love going to festivals and shopping on Black Friday, but I know my son’s triggers and avoid crowds as much as possible. Do I accept that his room is filthy, or do I get him to do his school work? I’ll take the latter, and I just give him lots of buckets in which he can stuff his clutter. Ultimately, I can’t change anything, but I can make things worse by huffing and puffing. I have to choose which battles to fight, and so do you.
Summer Alvarado is a former social worker and a mother of three, including a 14-year-old with autism spectrum disorder. She lives in Pace, Florida.
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.
April is Autism Awareness Month, which means different things to different people. Is it a month to educate others about autism spectrum disorder? To support acceptance of those who have ASD? To push for research into what causes autism and what therapies hold the most promise?
The answer is simply: yes.
Autism awareness has grown tremendously since this month was first commemorated in 1970, but ASD advocates yearn for more research and support. There is still so much work to be done. In the United States, 1 in every 68 births results in an ASD diagnosis. While there is no cure, research shows that early intervention services — think from birth to 3 years old — can improve a child’s development. With more awareness comes improved opportunities for early diagnoses, and therefore better outcomes.
“There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people,” states the Centers for Disease Control and Prevention. “The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged.”
According to CDC research, ASD occurs in all racial, ethnic, and socioeconomic groups, but is about 4.5 times more common among boys than among girls. Among children identified with ASD who had IQ scores available, about a third also had intellectual disability.
This month, do your part to raise autism awareness in any number of fun and rewarding ways. Take in a sensory friendly film showing, participate in a local fundraiser walk, attend a seminar at a nearby university, or just sport your autism awareness puzzle-piece pin. In addition to raising awareness, participating will help provide a sense of community and serve as a reminder that you’re on this journey with others a lot like you.