How to Open an ABLE Account

August 9, 2017 by Courtney

You’ve read the merits of an ABLE account, and now you’re ready to open an account. So, where do you start?

First, you must find out if the person with the disability is eligible to have an ABLE account. Eligibility is determined by age of onset and severity of the disability, which can be physical, intellectual, mental or blindness. If the symptoms of the disability appeared prior to age 26 and the disability is significant enough that it causes marked and severe functional limitations in the
person’s life, then they would be considered eligible.

Since most of my readers have a loved one with Down syndrome, this is easy because he/she was born with the disability. If the person is already deemed eligible for Supplemental Security Income (SSI) or Social Security Disability Income (SSDI), then they automatically meet the severity of disability requirement.

Next, If they are not yet eligible for SSI or SSDI, then they will need to get a letter certifying the disability from their doctor. Troy falls into this category, because of he is a minor and our income level. There’s still no official certification form that doctors must fill out, so just have your child’s doctor certify that your child’s disability occurred prior to age 26 and causes marked and severe functional limitations in your child’s life.

You won’t actually turn this letter into the ABLE account state agency or the federal government. The IRS and state agencies have stated that they have no way of storing all these confidential medical documents. Instead, you’ll want to keep this certificate in a safe place in case the IRS ever audits the ABLE account. For more information on eligibility click here.

Now, it’s time to compare state ABLE programs.

Twenty-seven states have started ABLE account programs, and most allow non-residents to sign up. For example, we’re a military family living in Ohio this year; who knows where we’ll live next year. We opened a Tennessee ABLE account for Troy, because the state has no cost to open or maintain the account. The down side is Tennessee’s ABLE accounts don’t have debit cards yet, which is ok for us now because we don’t plan to use this account until Troy’s an adult.

Most states let you transfer to another state for low or no transfer cost, if you change your mind about which ABLE program can best suit your needs..

All ABLE accounts have tax savings in that their earnings are exempt from federal and state income tax; much like a 529 account. However, a handful of states have made these accounts even more tax-advantaged by creating an income tax deduction for contributions to an in-state ABLE account.

The best place to compare all the ABLE Programs is the state map comparison tool found at the ABLE National Resource Center.

They have a detailed and interactive comparison chart, which allows you to compare up to 3 states side-by-side using different criteria like whether or not the state has annual set fees or if there’s a minimum contribution.

Remember the potential account holder can have only one account open. Only the guardian of the person with the disability or the person with the disability themselves (or someone with legal power of attorney) can open and be in control of the account.

Check with the state you open the account with to determine who has control of the account once your loved one with Down syndrome becomes an adult. Some states suspend the ABLE account until the account holder decides if anyone else should have control of the account. Other states, like Tennessee, allow the guardian to continue having control unless that power is specifically revoked by the account holder.

Below is an introductory video to understand the benefits of an ABLE account. You can also continue to get information from the ABLE National Resource Center as part of their month-long #ABLEtoSave campaign. Upcoming topics include what the ABLE funds can be used for, what some of the key investment terms mean, and factors to consider when choosing the right program for you and your family.

Let me know below if you plan to open an ABLE account or any concerns you may have.

College Scholarships for Students with Down Syndrome Is The Pot at the End of the Rainbow

August 8, 2017 by Courtney

College acceptance for students with Down syndrome is a real possibility, as you learned in my very first blog post. But once you’re accepted, how do you pay for college tuition?

Ruby’s Rainbow, that’s how!

Ruby’s Rainbow is an amazing non-profit that grants post-secondary scholarships to students with Down syndrome. The scholarship recipients can use the money for a university, community college, or vocational program.

Ruby’s Rainbow creator and Executive Director, Liz Plachta says the non-profit gives over 40 scholarships every summer, each worth from $3,000 to $5,000 dollars.

This year, the organization raised a record $137,500 for 47 Rockin’ Recipients. Check out the winners here.

Ruby’s Rainbow is such an important organization, because college tuition for students with Down syndrome can sometimes costs more than typical college tuition.

At Syracuse University’s InclusiveU program, tuition can increase by $10,000 dollars to $24,000 a year if a student needs addition supports. That’s enough to make college out of reach for this group of students.

“Parents weren’t expecting to pay for college for their child who was born with Down syndrome a generation or two ago,” Plachta says. If a student with Down syndrome decides to go to a community college, Ruby’s Rainbow scholarships could cover the whole cost.

Also, the Higher Education Opportunity Act allows college students with cognitive disabilities to apply for pell grants or work study funds, but they still can’t get a student loan.

The inspiration for Ruby’s Rainbow is Plachta’s daughter, Ruby, who is now 7-years-old and rocks an extra chromosome.

“I knew I wanted Ruby to have the same opportunities as her older sister. I didn’t even know if people with Down syndrome went to college when Ruby was born. But I started researching and found college programs for student with cognitive disabilities…

…At that point, I was full force ahead. I wanted to raise expectations!” says Liz Plachta, Ruby’s Rainbow creator.

And raise expectations is just what she did!

“The non-profit’s growth has blown me away!” Plachta says. This year Ruby’s Rainbow almost doubled their applicants and recipients. Since 2012, the organization has provided more than $400,000 in scholarship money to over 150 students with Down syndrome.

“When we first started, my goal was to raise $2,000 dollars and give one scholarship. That first year we raised $20,000 and gave 10 scholarships!” explains Plachta.

One of the first scholarship recipients, Alex Bender, just graduated from University of Cincinnati’s 4-year Transition and Access Program (TAP).

Alex Bender, Ruby’s Rainbow Scholarship Recipient

“I love my college, University of Cincinnati, a ton! Now that I graduated my plans are to get a Job at University of Cincinnati Bearcats Athletics Department,” Bender explains.

Bender plans to live in a house or apartment near the University of Cincinnati with friends. She says Ruby’s Rainbow helped make all this possible.

Plachta says her next goal is to raise scholarship amounts. “Right now our scholarships make a small dent in college tuition. I want to make our impact even bigger,” Plachta says.

Of course, all of these scholarships are made possible through generous donations.

“I see a piece of my daughter, Ruby, in every single applicant we review. I hate to turn anyone away, but right now we don’t have the funds to give every applicant a scholarship,” Plachta explains.

Ruby’s Rainbow’s biggest fundraiser is on March 21st or World Down Syndrome Day. They ask donors for 3 ways to help:

Donate $21 (representing the 21st chromosome–people with Down syndrome have 3 copies of this chromosome)
Make a pledge to be kind to people of all abilities
And ask 3 friends to do the same

Plachta expects to announce this year’s winners in August sometime.

To find out how you can donate, apply, or find out about this year’s recipients visit Ruby’s Rainbow at www.rubysrainbow.org

5 Ways You Know You’ve Become Your Child’s Best Advocate

August 2, 2017 by Courtney

Five years ago my biggest worry was buying the cutest matching outfits for my unborn twin boys. All that changed when one of our boys was born with Down syndrome.

Troy (in the back) and Hunter (in the front)

Troy completely changed our family’s perspective, and set me down a path of advocacy that has changed my life forever.

An outsider may believe these changes would be for the worse, but I continue to be amazed at how many new, unique doors have opened for me because of Troy. I continue to be amazed at how “normal” and happy our family continues to be amongst the messiness of a seemingly scary diagnosis. We truly are the #luckyfew!

Everyone’s path is different, even in the small world of the Down syndrome community. But I’ve found some shared characteristics amongst many of the parents of children with special needs that I’ve met.

Most parents possess that innate strength to do anything to protect their child. Special needs parents just have to flex that muscle more often.

In five short years, I’ve become a champion for my son and his right to a life of self-determination and choice. And I realize I’m not alone. Many disability advocates can identify with the following actions, or something similar to them.

5 Ways You Know You’ve Become Your Child’s Best Advocate

1. Your child’s personal file is larger than your own.

Troy is a really healthy, smart fellow. Still, Down syndrome automatically comes with a long list of doctors appointments, therapy sessions, and Individualized Education Plans. All of this has been compiled on hundreds of pages in two giant 3-ring binders.

Experience has taught me that you don’t know where you’re going, unless you know where you’ve been. Troy’s records help me quickly reference what’s happened in the past, so I can advocate for the best future possible.

2. You can recite federal, state, and local laws that impact your child, and you often know more about these policies than the experts do.

You can recite the meaning of countless acronyms: IDEA, IFSP, IEP, FAPE, LRE, SSI, BIP, ADA, ABA, UDL, ASL
You know your child’s rights under the law, and realize that in many situations it’s up to you to see that laws are enforced.

Personally, I’m working with my Ohio state legislator, Niraj Antani, to introduce a bill that would end organ transplant wait list discrimination for individuals with disabilities. Rep. Antani seeks advice from disability advocates on this subject, because he realizes we are the experts.

In terms of the recent Senate health care bill, Better Care Reconciliation Act (BCRA), I’ve been advocating tirelessly alongside fellow disability advocates to see that Medicaid is not cut. Many legislators are unaware of the important impact of Community and Home Based services Troy and other individuals with Down syndrome receive through Medicaid. It’s our job to educate those in power on the power of legislation, and how it’s revolutionized the disability community in the past generation.

3. You’ve become fast, close friends with complete strangers.

Social media is a powerful force in the disability community. It’s brought together like-minded advocates from around country to rally for a common cause. I have dozens of friends that I’ve never met, but feel a special bond with because of Troy. When I meet these fellow special needs parents at conferences or advocacy meetings, it’s like meeting a distant loved one. There’s an instant connection and a desire to share your path with others like you. It’s what makes us the #luckyfew.

4. Your hobby or new career path includes advocating for your child.

I have interviewed and spoken with so many amazing parents, siblings, and family members that have transformed a seemingly scary diagnosis into an opportunity to change people’s perceptions and create opportunities for their loved ones. Everything from volunteering for their local Down syndrome association to blogging about their experience to starting a business that specializes in special needs planning and marching on Capitol Hill.

Before I had Troy I taught middle school history, and assumed I would go back to teaching once my twin boys were in school. Now I’m applying for the Council of Parent Attorneys and Advocates Special Education Advocacy Training to become an advocacy expert. My number one priority in doing this training is ensuring Troy gets the education he needs and deserves, but I would also love to help other families along their journey. I’ve always wanted a job that serve others, and I’m proud to say that Troy has helped me continue on this career path in a new and surprising way.

5. Your vacations include meetings with your legislator or advocacy calls

We just spent a week in Michigan with family, and I really wanted to turn off all things advocacy. I was feeling disability advocacy fatigue big time, especially with the endless fight to #SaveMedicaid. I did a fairly good job of this with trips to the lake, shopping, and running a race with my mom. Still, I couldn’t help but call a fellow disability advocate friend to find out about an important advocacy meeting she had while I was gone.

Even my vacations have been planned around advocating for Troy. We coordinated a trip to see family in California with the National Down Syndrome Convention. I visited my favorite city, the District of Columbia, this past spring to advocate on Capitol Hill.

Of course, you can take a totally different path and still be your child’s best advocate.

I have friends who purposely disconnect from any disability-related advocacy efforts. I can respect and understand their choice to do so. In the end, it’s about loving your children for who they are and supporting their path to a life of self-determination and choice. There’s many ways to get there. Which path have you chosen? Tell me about it below.

Why Your Child with Down Syndrome Needs an ABLE account

July 28, 2017 by Courtney

Some of the best advice I received when Troy was born was to live in the present; to treat my son like any other baby. Looking too far into the future can be a daunting task for parents with children with disabilities.

What do you mean you haven’t opened that college savings fund yet? Troy (right) with his typical twin (Hunter) at 5 months old.

Will my son live independently? Will he have a job, and be a contributing member of society? Will he have friends and be happy? It may seem easier to ignore these thoughts, but thinking constructively about your child’s future has its rewards.

The Achieve a Better Life Act (ABLE) is one way to control your child’s future success today. ABLE accounts are tax-advantage savings accounts, similar to a 529 college savings account but you can save for so much more than just college.

“ABLE accounts give people with disabilities the potential to significantly increase their independence and quality of life, without jeopardizing benefits such as Medicaid and Supplemental Security Income (SSI),” explains Heather Sachs, Senior ABLE Advisor at the ABLE National Resource Center.

Before ABLE passed, individuals who received disability benefits could only have $2,000 to their name. “This was just so wrong. People with disabilities were forced into a life of poverty and dependence on government,” Sachs said recently at a workshop on ABLE at the National Down Syndrome Congress Conference in Sacramento.

Now, with an ABLE account people with disabilities can save up to $100,000 dollars total without losing their SSI or Medicaid benefits. We opened Troy’s ABLE account this past spring. You can read about it here. I soon realized this is not just a college savings account, and with looming threats to cut Medicaid it may end up supplementing needed government supports.

Troy and other ABLE account holders can use their savings at any age on ANYTHING that will improve their independence, health and wellness. This includes private therapies, medical equipment, assistive technology, school expenses, employment related costs, transportation, and housing just to name a few.

“The list of eligible expenses is defined very broadly,” explains Sachs. This means Troy could use his ABLE account for an iPad to play his favorite Starfall phonics game. An adult beneficiary could buy an iPhone (assistive technology) to call Uber (transportation) to get to ballroom dance lessons (wellness), and their ABLE account would pay for it all. “There’s no preapproval necessary for these purchases, but keep your receipts in case you’re ever audited,” Sachs says.

ABLE Accounts have a $14,000 a year contribution limit, and 48 states already have ABLE plans. You can compare state plans here. Shop around for the best plan, because most states allow non-residents to sign up.

We went with Tennessee’s ABLE plan (even though we have no connection to the state), because their is no initial or annual cost.

Even though roughly 10 million Americans could benefit from an ABLE account, only 10,000 accounts have been opened since the first program started in 2016. So, why aren’t more people taking advantage of this tax-advantage savings accounts? “In a few words: lack of information and skepticism,” says Sachs.

Now the ABLE National Resource Center (ANRC) wants to change that with an awareness campaign starting the month of August. You can sign up for weekly ABLE informational webinars (every Wednesday in August) here.

Check back next week, when we bust the myths surrounding ABLE accounts.

NDSC Convention Advocates Fight to Save Medicaid

July 25, 2017 by Courtney

The 45th Annual National Down Syndrome Congress Convention was amazing. Advocates from all over the country and world came together for the biggest, happiest family reunion of the year.

This year in particular advocates were mobilized to fight to #SaveMedicaid. Dozens of advocates, including myself, shared our story in this short video clip. Please share widely!

https://vimeo.com/226929916

U.S. Senators on Tuesday voted on a motion to proceed to debate the healthcare bill. There’s still no clear understanding of what the bill would include.

“Senate Republicans narrowly prevailed on a key procedural vote on Obamacare repeal legislation, a big win for President Donald Trump and GOP leaders after their repeal effort was all but left for dead last week.

Vice President Mike Pence was expected to break a tie. Republicans will now start work on legislation, with a series of votes expected in the coming days and the outcome uncertain.”–Politico