After serving more than 20 years in the U.S. Air Force, Margaret Crowe retired to better advocate for Lilly, her nine-year-old daughter. Lilly has Autism and other special needs, and Margaret has long sought an appropriate way to plan and save for Lilly’s future. She found a lot to love with ABLEnow – she answered a few questions and shared her experiences with ABLEnow thus far.
Please tell us a bit about Lilly.
Lilly is an amazing little girl. She was diagnosed with Autism and several other disorders when she was around four years old. One of her superpowers is hyperlexia (the ability to read before the age of three with no formal instruction). When she started talking around the age of three, we realized she could read anything we put in front of her. She is very active and loves academics. She has a fascination with foreign languages due to her hyperlexia, which is a decoding skill.
Despite her many strengths, Lilly is considered intellectually disabled and spends 30 hours a week in Applied Behavior Analysis (ABA) therapy to work on a multitude of skill sets that do not come naturally to her.
What challenges did your family face when planning for Lilly’s future?
After we found out that Lilly has autism and an intellectual disability, I started making calls to my bank and contacting local colleges and universities to see if I would be able to utilize her regular 529 for special education programs for college (e.g., Mason Life at George Mason University). No one could give me a definitive answer as to how or if we could use the money we saved for Lilly’s college. The only recommendation I received was to transfer the money to her brother or use it for another family member.
Then, imagine hearing that the money you saved for your child’s education could not be used (without penalty) for her particular needs. I started following the legislation process for the ABLE Act. I was thrilled when the ABLE Act passed and there would be a viable option to save for my daughter’s educational, medical and personal needs.
What does having an ABLEnow account mean to your family?
As parents of a child who may need significant support for her entire life, having options for her care is imperative. Lilly’s medical and therapy costs easily exceed $100,000 per year. Even with a decent family income, the costs associated with caring for a special needs child are significant.
Having the opportunity to save for Lilly’s future without affecting her ability to receive state and federal assistance some day is a game-changer for families like ours. State and federal assistance will never cover the cost of Lilly’s needs, so having the opportunity to save additional funds for her is priceless.
How does ABLEnow affect your ability to save for Lilly’s expenses?
Before ABLEnow, there were very few savings options for families with special needs children. In the Commonwealth of Virginia, individuals on the ID waiver wait list can wait 10 years or longer for assistance and services. Saving in a 529 plan is not a viable option, either; the money can’t be used for the child without penalty if they are unable to go to college. Other savings programs could adversely affect her ability for disability benefits as an adult.
ABLEnow allows us more flexibility in how we use our money to care for Lilly’s needs. For now, we moved the money from Lilly’s 529 account to her ABLEnow account and are continuing to save. In the future, Lilly will need the money for training, therapy and living expenses.
How has your ABLEnow account changed the way you think about Lilly’s future?
ABLEnow gave us peace of mind that we can help provide for our daughter as an adult without jeopardizing assistance she will receive from other sources. The quality of her adult life means everything to us.
*Margaret Crowe is a paid ambassador for the ABLEnow program. Her experience as an account owner may not be representative of other account owners.
