How One Brave Mom Is Navigating a Down Syndrome Diagnosis
Endurance over Speed
“I was going to do it all,” thought Florida mom, attorney and passionate special needs advocate Catherine Davey. A notion planted in almost every mother’s head and heart from the moment she sees the second line appear on a pregnancy test. Or, in Davey’s case, when she and her husband discovered they were expecting their third child, even when science had told them it would be impossible. In this case, the stakes were even higher, as they learned that their daughter would be born with Down syndrome.
As Davey soon found out, even before her spitfire daughter — Mae, now 6 — was born, the journey of parenting a child with Down syndrome would be a marathon, not a sprint. Fortunately, unlike most marathons, Davey learned that it would not be a solo endeavor, and that doing it all herself wouldn’t, and shouldn’t, be her expectation.
Find Your Tribe
Through the initial surprise and grief of the diagnosis, Davey and her family landed firmly in a place of optimism and unconditional love. The next step seemed logical; find others who have navigated a similar journey. Davey was shocked at the valuable relationships her village was able to provide.
She encourages anyone parenting or expecting a child with Down syndrome to join their local Down syndrome association. These communities are welcoming, encouraging and comforting. They offer transparency about their own experiences and an unparalleled sense of empathy, free of the kind of sympathy that can feel disingenuous.
“It’s a safe place to talk about DS, with people who love DS,” Davey said.
Strategies to Survive and Thrive
The old adage that there is no playbook for parenting rings a little false to Davey because one of the best resources she’s discovered is an actual playbook for following up on potential medical issues for a baby/child with Down syndrome. Of course, each child’s journey is a little different, but the steps and situations discussed are tried and true. Davey found great success in following along when these scenarios mimicked her own experiences almost exactly.
Assembling your medical, emotional and mental support teams is also a crucial element according to Davey. From identifying top resources to finding the right person for your child, this one aspect simply cannot have a one-size-fits-all approach. And just because someone is internationally renowned, doesn’t necessarily mean they’ll be the right fit for your child. Similarly, what is working one month may not the next.
Davey says that you should feel empowered to find the right team for your family, and even if you find the perfect team for now, that does not mean they will always be the perfect team. Don’t be afraid to move on if that is what is best for your family.
Davey advocates for utilizing every resource possible, including opening a tax-advantaged ABLE United savings account, to help support costs associated with care. Davey utilizes Mae’s ABLE account to pay for her different therapies — including applied behavior analysis, which she credits as helping Mae master skills and overcome challenges that are common for children with Down syndrome but are not covered by the family’s health insurance.
A Little Education Goes a Long Way
Unfortunately, a Down syndrome diagnosis can sometimes mean experiencing prejudice from even well-intentioned people. Davey recommends educating yourself to be prepared and empowered — so that you can focus on how to help your child rise to their full potential.
Normalizing Down syndrome is an ongoing effort that Davey is proud to be a part of. For instance, per Davey, “One in every 691 live births is a child with Down syndrome.” Staggering numbers such as this suggest the Down syndrome experience is everywhere in every race, every culture, and every financial level. Armed with those statistics and confident attitude, Davey is ready to take on the hardest part of parenting a child with Down syndrome: changing the world so that others can see the joy as well.
Find the Help You Need — to Be the Parent You Want to Be
There isn’t a parent in America who doesn’t feel overwhelmed from time to time, and this will undoubtedly apply to a parent raising a child with special needs. It’s okay to ask for help. Read that again — it’s okay, imperative, in fact, to ask for help. This means more than finding the right medical professionals and educational resources for your children. This could mean finding your own therapist, hiring a mother’s helper, asking a friend for help, delegating duties to older children, spouses or extended family — so that you can become the parent your child needs.
For Davey, her path to advocate, and ultimately warrior, was a clear one. She is a practicing attorney who has always practiced in the area of probate, guardianship and estate planning and has put that education and expertise to work for her family. Davey and her team, always careful to give credit where it’s due, were able to identify some gaps in Florida’s laws and rules as they pertain to guardian advocacy. Through hard work, dedication and collaboration, the Florida Supreme Court approved Davey’s work. Davey was quick to add that her path will undoubtedly look different from someone else’s, but the most important thing is to be true to who you are as a parent and as a person.
More than a Diagnosis — a Destiny
Though no parent imagines walking the path of a Down syndrome diagnosis, Davey is convinced that anyone who begins that journey will come to view it as a blessing. There are certainly challenges, but the highs are exhilarating. Watching your child achieve a lofty goal, seeing them change the world with their unabashed enthusiasm for life — these make up the best part of navigating a Down syndrome diagnosis.
“You’re always going to be a warrior for them,” Davey said.
In 2018, the Davey family traveled to New York City to see Mae appear on a jumbotron in Times Square as part of the National Down Syndrome Society NYC Buddy Walk. A thrilling and telling experience for Davey who says, at the end of the day, if you ensure that your child is the star of their own show, then no diagnosis will derail their opportunity for a full life.
“This kid has made me the best version of myself. She’s turned my volume all the way up,” Davey beamed. “To see her succeed; to see her communicate; to see her be proud of herself and ride a bicycle and just be joyful is amazing. And she brings all of that out in all of us.”
Five things you need to know about the most trusted savings account for persons with disabilities
Maybe you’ve heard of Florida’s ABLE savings program, ABLE United? But do you really know how it works, and why it’s the best option to work alongside other government benefits and savings vehicles?
That’s exactly what we’re here to tell you. Let’s set the record straight with facts that dispel some of the most common misconceptions people have about ABLE savings and investment accounts.
- Having an ABLE United account DOES NOT affect other benefits.
Whether you or your loved one currently receives any number of federal or state benefits — including, but not limited to: SSI, SSDI, Medicaid, SNAP, TANF, HUD Assistance and Section 8 — this does not prevent you from opening a tax-advantaged ABLE United savings account. The account will not affect other disability benefits, and this is one of the main reasons ABLE accounts were created.
In fact, these programs work well together, including alongside Supplemental Security Income (SSI) — you can save up to $100,000 with ABLE United before your savings counts against the SSI $2,000 asset limit. And, housing expenses don’t impact SSI if they are paid directly from the ABLE United Account to a third party, or withdrawn and paid in the same month.
- ABLE United accounts are not subject to Florida Medicaid Payback.
On June 7, 2019, the Florida Senate signed House Bill 6047 assuring all ABLE United beneficiaries and their families that there will not be a Medicaid claim filed on an ABLE United account when a beneficiary passes away. ABLE United accounts can be used to pay for funeral and burial expenses, as well as legal fees and other Qualified Disability Expenses, and any additional funds will be paid directly to the individual’s estate. In an already emotional and stressful time, ABLE United will be there to assist you.
- You CAN access your ABLE United funds whenever, wherever.
Plainly stated, you can request a withdrawal from your ABLE United account for any reason. There is no preapproval process. It’s easy to use your ABLE United account. And, because you may not always be able to anticipate when you’ll need access to your money, we’ve made it easy to use ABLE United funds with an ABLE Visa ® Prepaid Card. You can use your prepaid card everywhere Visa is accepted, and manage expenses in an online portal.
- You can open an ABLE United savings account at ANY age.
There is no age limit when it comes to opening an account; the requirements for opening an ABLE United account are that the beneficiary must be a Florida resident when applying, and must have a qualifying disability with onset prior to age 26. We’ve put together an easy tool to help you check your eligibility for an ABLE United account, and a helpful list of eligibility requirements.
- An ABLE United account DOES NOT replace a Special Needs Trust (SNT).
We understand how important it is to prepare for whatever life has in store, which is why ABLE United is designed to help persons with disabilities maximize the ways they can save and grow their safety net. While an SNT can be used to fund an ABLE account, it can also include non-cash assets and requires an attorney to set up — at extra costs to you. Alternatively, ABLE accounts provide flexibility, are easy to open and manage, and allow your earnings to grow tax-free.
ABLE United’s name was derived from the Achieving a Better Life Experience (ABLE) act and created by people who care, for people who deserve an account created with their needs in mind. Whether you’re just beginning to devise a savings strategy to work in conjunction with other government benefits or are seeking to expand your current plan and take advantage of tax-free savings, ABLE United is your partner. ABLE United is managed by the Florida Prepaid College Board, trusted by Floridians for more than 30 years.
Open your ABLE United savings account online today, or call 1-888-524-2253 with any questions you may have.
Born and raised in Miami, Geno is a star athlete on the Special Olympics National Team representing Florida in softball. His infectious personality makes him a stellar teammate and friend.
At an early age, Geno was diagnosed with autism but that has not slowed him down. In addition to the medals he’s won during his time competing in the Special Olympics, he has also served as a Customer Service Representative at Publix for 12 years.
His mother, Shebah, often describes her son as “gregarious.” Shebah shared that he enjoys everything that the Sunshine State has to offer, including sports (his favorite team being the Miami Heat), fishing, and music.
To ensure Geno’s financial future, Shebah recently opened an ABLE United account. “Being a single mother, I understand how important his financial independence would be to improve his quality of life,” she explained.
Since the day he was born, Shebah has wanted the best for Geno and has worked hard to set him up for success.
“Even before his diagnosis, I wanted Geno to be an active member of the community, contributing his many talents, regardless of his career path or disability,” she shared.
As advocates of the savings program, Geno and his mother are teaming up as the newest ABLE United Ambassadors. “We are excited to share with others how ABLE United has helped set him up for success and truly achieve a better life experience,” Shebah said proudly.
The spring months generally provide the ABLE United team an opportunity to connect with thousands of Floridians with disabilities at in-person events, conferences and special presentations. However, in this time of social distancing, we know that’s just not possible.
In an effort to stay connected, we are launching the ABLE at Home campaign.
From new hobbies and science experiments to learning life skills, connecting virtually with others and extending kind gestures to neighbors and friends – many are using this extra time to find the “silver lining.”
Throughout the month of May and June, we want to hear how you are spending your time at home. Share a photo of yourself and what you’re up to at home to be entered into our ABLE at Home giveaway. Three grand prize winners will win a brand new 10.2-inch iPad to help you stay connected with family, friends – even classmates. To review the iPad Promotion Guidelines, please click here.
But, wait, there’s more.
Individuals who enroll in a new account between Friday, May 1 and Tuesday, June 30 and complete enrollment by depositing at least $25, will receive a FREE $75 contribution on us.
We hope that you’ll consider using this time to add enrolling in an ABLE United account to your to-do list and make saving for you or your loved one part of your daily, weekly or monthly routine.
We look forward to “seeing” you all this month while #ABLEatHome.
Enroll in a new ABLE United account between May 1, 2020 and June 30, 2020 on ableunited.com, and you will receive a $75 contribution into your new ABLE United account. This offer only applies to new accounts opened between May 1, 2020 and June 30, 2020. Funds earned will be deposited directly into your ABLE United account by October 1, 2020. ABLE United is a savings and investment plan that may be used to set aside funds for qualified disability expenses. Funds may be used tax-free to pay for any qualified disability expense. This promotion is limited to the first 500 accounts. ABLE United reserves the right at its sole discretion to disqualify any individual it finds to be in violation of the guidelines or any laws, or to be attempting to undermine the legitimate operation of the promotion by cheating, hacking, deception, or any other unfair practices. Please review the Program Description and Participation Agreement before opening an account.
With the introduction of the new ABLE Visa® Prepaid Card, ABLE United account holders can start swiping and instantly access funds to be used online, in stores – or anywhere nationwide that accepts Visa debit cards.
Our relationship with money is so important because it affects almost every decision we make, that’s why we are excited to now offer this optional prepaid card to our account holders. It’s a simple and fast way to access and utilize funds saved in an account, but most importantly, it provides increased flexibility – an ABLE United account on the go.
How it Works
Account holders can load funds onto the prepaid card from their ABLE account. The ABLE Visa Prepaid Card can be used to pay for qualified disability expenses like doctor’s appointments, transportation and even everyday living expenses like groceries. You will also be able to review and manage all charges made to the prepaid card by logging into your ABLE Visa Prepaid Card account.
If you’re an account administrator, you can order a card for yourself to make purchases for the beneficiary, request a card for the beneficiary, or both. Each card has its own balance and spending controls, so you decide how funds can be used.
The ABLE Visa Prepaid Card not only provides flexibility, but it also provides an opportunity to teach children or young adults the importance of saving, budgeting and keeping track of their expenses. With the account administrator having control and managing the prepaid card, young adults will have the freedom to practice their financial independence – all while having the proper measures in place, knowing that only the amount set can be spent.
Sign Up Today
There is a $2.50 per month fee if you choose to sign up for the optional ABLE Visa Prepaid Card. Additional prepaid card fees may be assessed based on how you use your Visa Card. For more information, visit the Cardholder Agreement.
If you have questions, please call True Link Financial at 1 (844) 276-4547
The ABLE Visa Prepaid Card is issued by Sunrise Banks N.A., St. Paul, MN 55103, Member FDIC, pursuant to a license from Visa U.S.A. Inc. This card can be used everywhere Visa debit cards are accepted. Use of this card constitutes acceptance of the terms and conditions stated in the Cardholder Agreement.
True Link Financial, Inc. is required to periodically report certain Card information to the Visa Prepaid Clearinghouse Service (PCS) to assist in fraud prevention. Please contact PCS Customer Service for details regarding the information reported and on file with PCS. PCS Customer Service Department’s business hours are Monday – Friday, 9:00 a.m. – 5:00 p.m. Eastern Time.
Visa Prepaid Clearinghouse Service Customer Service Department
5005 Rockside Road, Suite 600-27 Independence, OH 44131 PH
Phone 1-844-263-2111 Fax 1-844-432-3609
As we near the end of the year, it’s important to take time and reflect on all that has been accomplished and set the tone for what’s to come.
We have provided more than 4,000 Floridians with a way to save without affecting public benefits like Supplemental Security Income (SSI) and Medicaid – an opportunity that was not available before ABLE United launched in July 2016. During 2019, we took this opportunity even further by enhancing many ABLE account features.
Introduction of Account Enhancements
In March, ABLE United transitioned its Customer Service and Records management to Sumday Administration, LLC, a wholly-owned subsidiary of the Bank of New York (BNY) Mellon. This transition allowed for additional program enhancements including an FDIC-insured savings fund option, live chat with customer service and an enhanced gifting portal to allow others to support account holders in reaching their savings goals.
Additionally, the ABLE to Work integration was added, which allows a beneficiary who is working and not contributing to a retirement plan the ability to contribute more than the $15,000 annual contribution limit.
Removal of Medicaid Recovery
Our most significant achievement was advocating the Florida Legislature to pass HB 6047, which was signed by Governor DeSantis in June. This bill eliminates Medicaid recovery from ABLE United accounts and clarifies that all outstanding funds in an ABLE United account, after Qualified Disability Expenses are paid, go to the beneficiary’s estate. Now, ABLE United account owners will no longer be treated differently than any other individual who receives Medicaid.
In addition to the significant account enhancements, we also celebrate you – our account holders.
Three years ago, we began the Faces of ABLE campaign to share the overwhelming number of inspiring stories we hear every day – this serves as a constant reminder to us about why we do what we do.
Thank you to this year’s Faces of ABLE who have openly shared their stories and how ABLE United is allowing them to truly Achieve a Better Life Experience:
March – Samantha
May – Natalie Jesselle
June – Sean
October – Samantha
It was a great year for ABLE United and our account holders – but we are even more excited for what 2020 holds!
Samantha Fox never imagined that she’d be entering her fourth year of educating children with autism at Loretto Elementary School in Jacksonville, Florida. Though she knew teaching was her calling, according to Fox, she didn’t think she was patient or smart enough to work with kids who had special needs. It didn’t take long for her to realize that none of that mattered.
“If you get right down to it, no matter what the child’s disability, underneath it all they are just a kid like all the rest. They just want to be supported, loved, included and not looked at like they are any different than everyone else,” Fox shared.
This is the chorus Fox and others sing when it comes to addressing the special needs of those with disabilities. When asked whether the general public is well equipped to understand this message, she said “not yet, but we are headed in the right direction.” Fox referenced how technology, the internet and our ability to connect provide the opportunity for people to learn about disabilities. The more knowledge and understanding that exists, the easier it will be for everyone to have a seat at the table.
For Fox, it’s all about normalizing inclusion. We’re lucky to be living in a generation that now includes a character with autism on Sesame Street and movies starring actors with Down syndrome. It’s our duty to continue to raise children who are inclusive and this is the best way to start. Another perhaps less obvious way to look at special education is how we can integrate those lessons into every curriculum. With anxiety disorder rates soaring among younger and younger children, we should consider including social and emotional health lessons in every classroom.
“It boils down to making adjustments in what we consider the norm, in order to make it so that all kids and adults are able to access what you and I can, like going to college or getting job training, eating at a restaurant, or buying groceries. We need to continue learning about inclusion in everyday life and what that can look like,” said Fox.
When ABLE United decided to feature a special needs teacher, we couldn’t have imagined just how powerful her testimony would be, or how it would align with our own goal—of making it possible for those with disabilities to thrive in every aspect of their lives. By taking time to understand and be inclusive of those with disabilities and by making sure resources are available to them, we can help to create a bright future in which everyone has a safe place.
If you have any questions about the only savings account created especially for persons with disabilities, you can call us directly at 1-888-524-2253. To find out if you or someone you know is eligible for an ABLE United savings account, try our eligibility wizard.
Autism spectrum disorder (ASD) is one of the most commonly misunderstood concepts in today’s culture. We’re glad that more people are making autism a part of everyday conversation, and ABLE United is dedicated to bringing awareness to the daily experiences and struggles of those with ASD.
We’ve found that there are a number of ideas out there about what it’s like to live with autism that just aren’t true and we’d like to dispel them. Here’s an exercise of True or False to test your knowledge of autism, assistance offered and the human experience of those diagnosed with the disorder.
1. True or False? People with autism are unable to feel emotion.
False. Very false, in fact. Happiness, sadness, frustration, joy and anger are felt as vividly by those with autism as they are by someone who is not on the spectrum. Sometimes those with autism will have different ways of expressing emotion, but the feelings are certainly there.
2. True or False? Insurance covers all the therapies required for those with ASD.
False. Unfortunately, yearly expenses can range from $17,000 to $21,000, and most insurance companies do not cover everything.1 ABLE United savings accounts are specifically designed to allow people with disabilities to save up to $15,000, tax-free, per year and can be used for a variety of expenses, including therapies.
3. True or False? Autism can be connected with physical ailments, as well as mental faculties.
True. Though largely neurological, there are other illnesses and disorders to which those with autism are more prone. Children with autism are eight times more likely to suffer from gastrointestinal disorders. And epilepsy impacts more than 30% of those with autism, while only around 2% of the rest of the population experiences it.
4. True or False? Those with autism should not drive a car.
False. Driving obviously requires a complex set of skills and can take time to master for those with autism, but the disorder alone does not preclude anyone from pursuing their goal of obtaining a driver’s license. The Interactive Autism Network published a helpful article with guidelines for those with ASD navigating the road.
5. True or False? ASD is caused by a complex combination of multiple factors.
True. Researchers have identified a wide range of genetic factors that can increase a child’s susceptibility to ASD. Unfortunately, since they have not isolated a single cause, it can make diagnosis and treatment a complicated effort of trial and error.
6. True or False? More and more people are being diagnosed with autism each year.
True. Improved diagnostic capabilities and increased attention can certainly account for the uptick in ASD cases throughout America, but the numbers do seem to be increasing exponentially. According to the CDC, 1 in 59 children are somewhere on the spectrum. When considering treatment from such an early age, it’s helpful to also consider an ABLE United savings account. Whether therapies and medication or educational activities, we want to ensure that those with ASD are armed to live their most fulfilling life.
7. True or False? People with ASD are less intelligent than those without.
False. Those with ASD are definitely not predisposed to have below-average IQs. In fact, many people with autism have high IQs and excel in things like math, engineering or music.
Sadly, many of these myths and misconceptions are still prevalent in our society today. It’s our hope that increasing awareness and fostering conversation is one step in the right direction for a better understanding of what it’s like to live with ASD.
ABLE United is committed to helping those with ASD prepare financially for their future, to learn more about the only savings account created specifically for those with disabilities browse this website or call 1-888-524-2253. Use our eligibility tool to see if you, or someone you know, qualifies for a savings account that won’t make you sacrifice your eligibility for Medicaid or Supplemental Security Income.
Question: What should every individual with a disability have?
Answer: If they qualify, an ABLE United account.
ABLE United accounts offer the ability to save while maintaining SSI and Medicaid. Family and friends can contribute to the account as well, and earnings are tax-free when used for qualified expenses. Now, to help you get started, we are kicking off the summer season with a special offer for new account holders.
If you open a new account anytime between May 1 – July 31, 2019, ABLE United will contribute $50 into your account to help you get a head start on saving!*
Did you know that we recently introduced new account features to ensure that individuals with a disability can save for a better life experience in the way that best fits their needs and goals?
New features include:
- FDIC-insured savings option for peace of mind
- Ability to choose how you withdraw funds to allow you to use your account your way
- Enhanced gifting page to allow others to support you in reaching your savings goals
- Live chat with Customer Service to answer all your questions
Opening an account is quick, easy and free – below is the information you will need to get started:
- Personal identifying information of the account owner and if necessary the person opening the account on their behalf
- Banking information
- Selection of savings or investment options
- A contribution as little as $25 to get started.
There’s never been a better time to start saving than now. Open your account today
Enroll in a new ABLE United account between May 1, 2019 and July 31, 2019 on ableunited.com, and you will receive a $50 contribution into your new ABLE United account. This offer only applies to new accounts opened between May 1, 2019 and July 31, 2019. Funds earned will be deposited directly into your ABLE United account by October 31, 2019. ABLE United is a savings and investment plan that may be used to set aside funds for qualified disability expenses. Funds may be used tax-free to pay for any qualified disability expense. This promotion is limited to the first 5,000 accounts. ABLE United reserves the right at its sole discretion to disqualify any individual it finds to be in violation of the guidelines or any laws, or to be attempting to undermine the legitimate operation of the promotion by cheating, hacking, deception, or any other unfair practices. Please review the Program Description and Participation Agreement before opening an account.
At ABLE United, we offer account holders professionally managed savings and investment options. These options include predesigned portfolios and individual funds from which customers can build a custom portfolio.
With the recent transition of our Customer Service and Records Management to Sumday Administration, LLC, a wholly-owned subsidiary of the Bank of New York (BNY) Mellon, we are excited to introduce an FDIC Savings Fund to the investment and savings options available to our customers.
The FDIC Savings Fund is an FDIC-insured savings account option with funds placed in a demand deposit account established by the Trust at the Bank of New York Mellon (Bank). FDIC insurance generally protects up to $250,000 of your deposits at the same bank in the same ownership right and capacity. The funds in your ABLE account invested in the FDIC Savings Fund, along with other deposits you hold at the Bank, will be insured up to $250,000.
This transition also provides more flexibility for customers by allowing the account holder to select which fund(s) to withdraw money from – an easy way to manage your investments separate from your savings.
It’s important to know that any new contributions can be directed toward any of the available savings and investment options, and all current investments can be transferred between savings and investment options up to two times per year. To make changes to your current investments, simply sign in to your account, click on the Investments tab, and look for the Change Strategy link under the Total Balance section.
We provide performance summaries for each of the eight savings and investment options on a monthly basis, which consists of the investment returns for each option net of the Investment Administration Fee (note: there is no Investment Administration Fee for the FDIC Savings Fund).
Have questions? Contact Customer Service through live chat or by calling toll free at:
1-888-524-ABLE (2253) (Monday – Friday, 9am – 6 pm ET)
1-844-888-2253 TTY (Monday – Friday, 9 am – 8 pm ET)