Dear readers, you know that I only share with you products and companies I love, and ones that I know have the potential to greatly help you, as well. In saying that, this is a sponsored post by ABLEnow but all opinions are my own.
In just a few more weeks my oldest son will turn 15. Life as his mom is so different than I thought it would be. As a mom with a teenager who has autism (and a host of other special needs) I’ve learned preparing for Adam’s future is a steep hill to climb. Where my friends’ kids are talking about drivers ed, college, and getting a part-time job my son is working on his long list of life-skills. As his mom, I’m looking to a future full of what-ifs and unknowns.
What Does the Future Hold?
Just last week, a few days before my son’s IEP meeting, his teacher asked me to help him fill out some forms which were in his backpack. I figured they were the typical assessment of behaviors, sensory processing, or life skills. They were not. These papers were packed with questions about the future. My son’s future.
Sitting next to him on the couch, we both huddled over the worksheets. Pen in hand, I asked him to point to the place he would like to live when he graduates. His choice was an apartment complex, home with his parents, a group home, and a few other similar choices. He slowly pulled up his hand and pointed to the one which read home.
“I want to live with mom and dad,” he said in a hushed tone. In that moment, my heart melts. What type of job would you like? The worksheet listed some ideas. Adam still has trouble communicating but he eventually made a choice. Next question.
What are your hobbies and interests? He looked down to the floor, eyes lowered, I don’t know. And so it went on as we discussed the possibilities of future employment and finishing high school. I looked away, tears streaming down my face.
Facing the Unknowns
I never expected this. And yet this is where we are. The truth is, as parents of children with special needs there are so much we are responsible for in preparing for our child’s future. Nobody tells you how much you are up against. It seems that you find out the moment your fears stare you in the face.
This reality is just starting to catch me and I know it will even get harder from here. For much of my son’s life, we have been waiting and seeing what we are up against. Nobody is ever certain and they’re never sure.
Where will he live? Will he ever be able to be independent? What about his trouble walking – physically we don’t know if we will have even more muscular problems as he grows. Will he be able to work? He really wants to be able to. It’s another wait and see.
Then there are medical expenses. Depending on what type of condition your child struggles with – you might be facing, even more, expenses than we have had. There are so many possibilities, so many unknowns in this wait.
The Financial Piece of the Puzzle
When I look at all the costs of therapists and special diets (Adam has struggled with terrible food allergies for many years), feeding therapy, speech, occupational therapy, physical therapy, AFOs and special orthotics, even the few surgeries he’s been through, the costs of raising a child with special needs are many. I know we are looking at a few more surgeries due to his muscle tone and some skeletal abnormalities.
For all of us the future is unknown – but when you are raising a child with special needs extra care and thought must be a part of the process. If you are a parent of a child who has special needs, so much is required in terms of thinking, planning, spending time, and of course, finances.
What is the ABLE Act?
I recently found out about something that could possibly relieve a little bit of the weight that the future unknowns bring. It’s a thing called ABLEnow and the ABLE Act. For years, individuals who qualified for SSI or Medicaid couldn’t have more than $2,000 in savings at any one time because they could possibly lose their benefits. I learned that a few years ago the ABLE Act became a law.
“Signed into law in December 2014, the Stephen Beck, Jr. Achieving a Better Life Experience (ABLE) Act authorized states to establish tax-advantaged savings programs for individuals with a disability.” (source)
Thanks to the ABLE Act, people with disabilities and families with children who have special needs are able to open up a special account under section 529A of the Internal Revenue Code. ABLEnow is administered by Virginia529, the country’s largest college savings plan, which now has an expanded mission to meet the needs of individuals with disabilities. This is amazing for us parents of kids with special needs and our children! This is a tax-advantaged savings account.
Finding out about ABLEnow
Although ABLEnow is administered by the Commonwealth of Virginia, it is open to people who are eligible in all states, and it is one of the country’s premier ABLE programs and open for national enrollment.
Even if you happen to live in a state that doesn’t have an ABLE program (yet), you are still able to join ABLEnow!
It also means that it won’t hurt your child’s chances at keeping their benefits. This is huge. No parent should have to worry about protecting their child’s resources like so many had to in the past. And best of all, this account is incredibly easy to use.
When I think of how much extra work, care, and planning goes into raising a child who is unable to truly be independent and care for himself, I’m so glad to know that this is available for him. It is also super easy and free to open. We just signed up online at able-now.com.
Gaining Financial Independence
The ABLEnow account can be used to pay for many different disability-related expenses. This includes things like housing, living expenses, and health. I love that it will give my son a sense of financial independence as he grows older. Also, included with the account is an ABLEnow debit card. This offers more independence in using the account.
I also love that anyone can donate to this account. That means for birthdays and Christmas – his grandma and grandpa, aunts and uncles can all make tax-deductible gifts directly to this account. What an awesome opportunity to help him prepare in the best possible way. Through the love of family, his help from us, and his ABLEnow account, he will have the opportunity to plan for his future.
Watch this short video to get a brief overview of ABLEnow: https://vimeo.com/ABLEnow/introduction
More information can be found here:
· ABLEnow FAQS: https://www.able-now.com/resources/faqs
· ABLEnow Customer Service: https://www.able-now.com/about-ablenow/contact
This is a sponsored post written by me on behalf of ABLEnow.
Heather Hart says
Thanks for sharing about this. It’s crazy to me how different states have different laws when it comes to federal programs such as SSI. I have a son with a disability and we moved from one state to another 5 years ago and they are still trying to figure out why some things are the way they are in our case, and it’s just a difference in the way the program is run.
Thank you for sharing this. I will make sure I pass it on to others. <3 <3 <3
Jennifer – Thank you for sharing this with others.
Kenya @ Kenya Rae says
Thank you for sharing this! If you don’t mind, I would like to share it in a monthly magazine newsletter I send out to my subscribers called the Humble Homemaker. It would just be a photo, intro, and link to the full post.
Certainly Kenya! Thank you!
Susan Evans says
I wished we all lived back in Bible times where no one left home ever unless they were getting married. Our individualist society is different than any other culture or time period in forcing children to leave home and be independent when they turn 18 instead of allowing them to work and earn money to build a home and own it outright before marrying. I just don’t like our American culture. It sets up our kids for a lifetime of debt. I’m talking about all kids that are 18, not just special needs. In Bible times, lots of people lived in each home, and people weren’t expected to live by themselves.
You are such an amazing mama, and I hope you know that!! That sweet boy of yours is SO incredibly lucky to have you. I’m a firm believer that God gives the most amazing parents children with disabilities because He knows they can handle it and inspire others to handle it with grace. Loved reading this post. I worked with children with special needs all throughout college and those kids are SO amazing and special to me. Sending hugs and prayers!!
Monica – Thank you for your kind words! Some of the people who have worked with our son along the way amaze and inspire me. That is such a calling and a passion. We love our therapists (and so does he!) We moved recently and he misses the ones he grew up with.
Sasha, thank you so much for bringing to light this program! I have many families I work with that could benefit. God bless you and your son’s journey!
Melissa – Thank you!
Thank you for getting this information out there! I shared this on Facebook because I know a lot of parents with special needs children. And my heart goes out to you concerning your son… I have a cousin with Cerebral Palsy and she’s also blind, but her parents have dealt with the same struggles you are going through now. So I am praying for you, that God will continue to give you guidance and comfort as you face these big decisions!
Jess – Thank you for your prayers and kind words!
Thank you for this post! We don’t have a special needs child, but our goddaughter has autism. I didn’t know this program exists but I’m going to share this with her parents!
Julie – Thank you for sharing it with your goddaughter’s parents!
Alice Mills says
I learned a lot from this post and had my heart broken in the process. I know that you know that God is faithful. In fact, I bet you know it more than most folks.
katie braswell says
Wow! Thanks for sharing Sasha! I have a few friends who are parents of Special Needs children! I will pass along the information! I think it’s special that he would like to live where he feels safe! I pray that he would find some things that make his heart happy; interests and hobbies. I pray that one day, opportunities would open up for him to feel accomplished and a sense of community even in the midst of a disability! <3
Thank you Katie! He does have some things that interest him but sometimes he doesn’t know how to answer the questions about it. For instance, he loves board games and music. My heart melted when he said he wanted to live at home. It is definitely something we are trying to figure out. Thankfully, we have a few more years until he graduates – but time is moving so fast these days.
Sarah Braden says
Thank you for giving us a window into your world and for this invaluable resource. I know it will help many others who find their families facing similar challenges.
Thank you so much for your honesty and vulnerability in sharing your experience. And for sharing resources that will help other families. ABLEnow will bless so many, but they could miss it if people like you aren’t sharing the word!
I know! I just heard about it recently and couldn’t believe what an invaluable resource it is.
Thank you for sharing your heart. I have a special needs child. Often times I forget that about her because I see her chugging along like there’s nothing to it. When I was talking to a friend just a bit ago about looking at colleges, she reminded me of the financial assistance for those with needs such as my child. Oh, yeah, she does qualify for that. Thank you for bringing awareness to this other program that you mention. I really appreciate it.
Maryann – I know what you mean. Our kiddos are so strong! Let me know if you check out this program. It is such a great resource!
Annette Dattilo says
I can so relate on all the unknowns. As a mom with a teenage boy with Down Syndrome that reality seems a bit overwhelming at times. I have not heard of this, but will definitely be looking into it. Thank you so much for sharing. Many blessing to you and your family. Xoxo
Annette – It can be overwhelming. It is a great resource!
Shannon | Shannie Chic says
Thank you so much for enlightening us on this program. I know a lot of families that could use the help and a lot more that need to have these more tough discussions. Good luck to you and your son.
Thank you for sharing this! It’s really helpful and I’ll pass this article on to a friend who will greatly appreciate it for her child with special needs.
Thanks for bringing this to light. We never know we are going to come across and this information may be invaluable to them one day. God bless you and your son. 🙂
Just the other day I was thinking about a childhood friend whose parents have cared for their special needs son all his life. His mother was a special lady and they too had many tough decisions to make.
Sarah Althouse says
Never heard of AbleAct or AbleNow but so glad it was implemented and around as a resource for parents like you!
Leigh Suznovich says
Oh thank you for sharing this. What a wonderful program. I wish you and your son the best of luck as you navigate his future. My brother-in-law and his wife have a special needs child that sounds like a similar situation to yours and I will be sharing this with them.
Leigh – Thank you and thank you for sharing!
Wow I had no idea! thanks for sharing your experiences. Sounds like you guys are doing the best you can for your son and that you love him, which is what matters most!
Erica @ Coming up Roses says
Thanks for sharing more about this program! I’ve never heard of it, but it sounds like such a great program for people who have a child with special needs. We definitely need to spread the word about it!
Thanks for the info. I read it as I sat rocking my T21 blessing to sleep. I was chatting with my older sis this morning about caregivers fatigue. She and her husband are the caregivers for his sister who is 54 and like my blessing also has Downs Syndrome. Unfortunately she is in the mid stages of dementia. Our chat of course had me traveling 54 years into the future and wondering who will be caring for my son. I am so very thankful I serve a God who promises to never leave or forsake us and who tells us not to be anxious over the future!!! Otherwise I’d be a basketcase!! ?
Deirdre J. says
Thanks for sharing this information. I have an mildly autistic son and some days it scares and overwhelms me to think about his future. I just focus on and celebrate the small victories. I didn’t know about the Able Now program. I literally got excited when I read that.
Deirdre – I’m so glad I shared this with you guys. It is such an amazing thing to be able to prepare a little bit better for our son’s future.
I absolutely had no idea that this existed. I am going to pass this along to some friends!
Rachel – That’s awesome! Thanks for sharing!
Alyssa Dawson says
I worked at DDD and spent a lot of time with children with disabilities and special needs. You are an amazingly strong woman!
Thank you Alyssa!
Jordan | Read. Eat. Repeat. says
This is great information! I didn’t know about this program at all. I don’t have a special needs child, but I know some people who do and I wonder if they are aware of this option.
Jordan – Thanks for sharing this! It is an amazing resource.
Thank you for giving us perspective and show us how we can be sensitive. I really admire mothers like you!
Karin – Thanks for stopping by and leaving a comment!
Shann eva says
This is such an awesome resource. I have twins that were born extremely premature. Even though they are only five, I worry about the future and what it may look like for them. It’s comforting to know there is something like this to help with their financial burden.
Azia Ellis-Singleton says
My aunt is my mom’s twin and has mental retardation and vitiligo. Growing up I used to be so sad because my mom would tell me I couldn’t spend the night at her home, but I’m convinced that our bond helped her become more independent so I could stay when I was just a few years older. Your blog is precious, and a gift.