NC ABLE Program Starts January 26

This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy.

Beginning Thursday, January 26, people with disabilities and their families can save and invest without losing means-tested benefits. ABLE accounts are affordable, tax-advantaged accounts that allow eligible individuals with physical or cognitive disabilities that occurred before the age of 26 to save up to $14,000 per year without interfering with certain means-tested federal and state benefits programs, including Medicaid and Supplemental Security Income (SSI). Accounts can be opened by the person with a disability as well as parents or guardians on behalf of qualifying individuals with disabilities.

Funds in an ABLE account can be used to pay for “qualified disability expenses” (QDEs), including rent and housing, transportation, educational needs, employment training and supports, assistive technology, health care and therapies, and other approved expenses.

North Carolina has joined the National ABLE Alliance, a group of 14 states that united to offer high-quality ABLE accounts at a reasonable cost. NC ABLE accounts are open to eligible individuals across the country for a fee of $45 per year. They carry no enrollment fees or minimum startup balances, and you can manage funds through an online portal.

Staring March 31, NC ABLE will also offer a program debit card and checking option that gives people a quick and easy way to pay for QDEs from their ABLE account’s funds.

Below is more information from the Autism Society of North Carolina about ABLE and NC’s program.

For all of the details, go directly to the website of the NC Office of the State Treasurer’s ABLE information page.

To sign up, go to NC.SaveWithABLE.com starting Thursday, January 26. (The page will not be active until then.) Accounts are opened online only at this time.

 

What You Should Know About ABLE Accounts

One account per individual with a disability

Parents can open on behalf of minor children. Guardians can open on behalf of eligible individuals for whom they have guardianship.

At this time, existing 529 college savings plans cannot be rolled over into ABLE accounts.

Please be aware, if an individual with an ABLE account passes away, the state or federal government may require money in an ABLE account be used to repay the government for services provided by Medicaid.

There is a flat fee of $45 per year. One-fourth of the $45 is taken out of the account each quarter over the year.

For investment account options, additional fees will apply (as with other types of investment accounts). Please see NC.SaveWithABLE.com or a financial planner for information about how investment fees are calculated.

ABLE accounts are NOT a replacement for special-needs trusts. Trusts may have other advantages for an individual or family. An individual can have a trust and an ABLE account. If you have an existing trust or need to invest or save more than $14,000 per year, please see a financial planner to discuss your options.

Be aware: Money goes into the account after tax. The distribution of funds is tax-free for qualifying expenses.

 

Eligibility

The law says those eligible have a “medically determinable physical or mental impairment” that occurred before the age of 26. This includes intellectual and/or developmental disabilities, autism, brain injuries before age 26, and other conditions.

The onset must be before the age of 26, but not necessarily the diagnosis. IDD conditions are generally present at birth or in early childhood even if diagnosed later.

Individuals can self-certify that they qualify to open an account. Keep in mind that if the IRS audits for use of an ABLE account, individuals must provide proof of their “medically determinable physical or mental impairment” before age 26. This typically means evidence of a diagnosis by a health-care professional, including mental/cognitive care professionals.

 

Signing Up

Only online signup will be available this week. Paper signup will be available at a later time.

Signup for investment accounts will start January 26.

Signup for debit cards and “checking” type accounts will be an option after March 31. If you plan to move money in and out of the account to pay for weekly or monthly expenses, a debit or checking option may be best. There are no additional fees for debit and checking options. Debit cards will be able to withdraw funds through Allpoints ATMs as well. See NC.SaveWithABLE.com for more info.

Customer-service staff can assist with online signup.

Paper statements can be requested; the default for accounts is electronic delivery of account statements.

 

Contributions and Income

Contributions can be one-time, recurring, or from payroll deposit.

Investment account options are typically for long-term needs and large one-time expenses and debit/checking for ongoing or recurring expenses. Debit cards/checking can be used to pay for one-time or recurring expenses. You will determine what works best for you.

Funds can be moved based on the current needs of the individual. Funds can be pulled from investment or debit/checking accounts for QDEs, though the process may be different.

ABLE accounts cannot be used to “hide” income. Gifts, earned income from work, and Social Security payments to the individual are considered income. An ABLE account can help a person save up to $14,000 per year (up to $100,000) with tax advantages while setting those ABLE funds aside when benefits programs take into account what the person has in savings.

Money earned by or given to the person is still considered income. Families who want to gift to the person with an ABLE account should direct those funds to the ABLE account. NC ABLE will issue “coupons” and instructions on how to do so.

There are other programs that people with disabilities can use if they are earning income. Medicaid allows someone to “buy into” their Medicaid benefits if they work and earn too much income. See NC DMA for more information.

 

Certifying Qualified Disability Expenses (QDEs)

It is up to the account-holder and/or their guardian to track their QDEs.

The NC ABLE program will not require individuals to certify their QDEs. This means you will not have to submit proof of expenses on a monthly or yearly basis.

HOWEVER, the IRS is likely to audit some percentage of ABLE account-holders as part of assuring that the program is being used appropriately. ABLE account-holders and/or their guardians should keep records of expenses in case of an IRS audit.

Accounts are tax-free as long as they are used for QDEs. If not, the IRS may recoup taxes from account-holders.

QDEs are determined by federal regulations and may be subject to change over time. The list maintained by the IRS for their auditing purposes is available on the NC ABLE website.

 

Who “Owns” the Account?

Under 18: the parent or guardian owns the account.

Over 18: the individual account-holder (person with the disability) owns the account.

Over 18, but under some form of guardianship: the account is still owned by the individual with the disability, but the account is controlled by the legal guardian or person with power of attorney.

There are options to monitor the accounts without having access. Please see NC.SaveWithABLE.com for more info.

 

If you have questions about this or other public policy issues, please contact Jennifer Mahan, Director of Advocacy and Public Policy at ASNC, at jmahan@autismsociety-nc.org or 919-865-5068.

Staying Safe: ASNC Can Help

As parents, we do all we can to make sure that our children understand how to remain safe. What’s “stranger danger”? How do you cross the road safely? How do you ask for help when you get lost or separated? But if your child has autism, you may face additional challenges, such as wandering (also called elopement, bolting, or running).

In a study published by the journal Pediatrics, 49 percent – almost half – of families reported that their child with autism had attempted to elope at least once after age 4. While they were missing, 24 percent of those children were in danger of drowning, and 65 percent were in danger of being hurt in traffic. No one wants to see a tragic outcome for kids who wander.

 

Online resources

If you have a child who is a “runner,” we have free information and tools that can help.

  • Download our tips sheet on wandering prevention that offers practical ways to help your child understand safety issues and inform authorities about their needs and interests.
  • Print and complete the Personal Information Record sheet and share it with law enforcement, your 911 center, and other first-responder agencies. This can help them identify your child and understand how to interact effectively with them.
  • Request our free ID cards that can be laminated and teach your child how to carry one to share with a first responder.
  • Order our Person with Autism decals for your car and home that help first responders recognize that occupants might not respond in a typical manner.

Prevention tips

  • Do not isolate yourself: Share and explain autism to your neighbors, family and friends. Share your contact info and ask whether they would be willing to help look if your child wanders. Keep a list of those who say yes.
  • Meet your first responders: Take your child to the fire station, police station, and EMS. Share the personal information record with them and introduce your child. This helps your child and the first responders.
  • Secure your home: Consider ways to keep your home secure. Examples include a home security system, window locks, door alerts, etc.  If your yard is not fenced, you may want to consider that as an option for keeping your child from wandering. If you own a pool, make sure it’s not accessible without adult supervision.
  • Working with schools and day cares: Share any concerns about wandering with your child’s teachers. Let them know what you want them to do if your child wanders and make safety goals part of your child’s IEP.
  • Teaching your child: Demonstrate and help your child learn safety skills such as what road signs mean, how to cross a street safely, and how to read traffic lights. Identify safe places (such as fire or police stations) in your neighborhood and practice going to them and waiting for help or an adult. Use visual or written cues to teach what to do in different situations, and practice sharing contact information. Teach children who are nonverbal how to carry and show an ID card.
  • Attend one of our workshops: We offer a workshop called “Staying Two Steps Ahead: Safety Considerations for Caregivers.” We will next offer it as a webinar on March 13. Register now.

 

We all want our children to grow up safely. Please contact an ASNC Autism Resource Specialist near you for additional information and resources on this important topic.

Sensory-Friendly Activities Ease Winter Blues

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“Oh, the weather outside is frightful…”

In these long winter months, many NC families are looking for indoor entertainment. It’s too cold to jump on the backyard trampoline, too icy to run at the park. Many will turn to indoor play areas, shows, and movies.

But these are not always good options for families who have loved ones with autism. Individuals with autism often are sensitive to sensory stimuli, and they may react in ways that are not typical, which can lead to judgment by others. They need a flexible and accepting environment so they can enjoy the activity.

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See a photo story from DPAC’s “Grinch”: https://spark.adobe.com/page/NBM0fNDJ6NbTF/

Fortunately, more and more businesses and organizations are offering “sensory-friendly” options so individuals with autism and their families can enjoy the same activities as other families. An example last month was the “Dr. Seuss’ How the Grinch Stole Christmas! The Musical” at Durham Performing Arts Center, made possible by sponsors Duke Health and SunTrust. DPAC’s special matinee included adjustments to the production, including fewer loud noises and flashing lights; designated quiet sections; and volunteers to assist families.

The showing was a great success and much appreciated by area families. One parent wrote, “Thank you so much for this special show! My 6-year-old son had the best time of his life. It was such a relief to be in a theater and know your child can feel free to be who he is, without having to worry. He laughed, sang, spent some time in the aisle, and wasn’t overwhelmed by the lights or sounds (as he sometimes is).”

grinch 1.jpgAnother said, “I cannot thank you enough for today’s performance. Hundreds of families in our community went to the theater today that would have otherwise not considered it. When you have a special needs child, it is hard to get out of the house sometimes. It is hard to spend money on events that you may have to walk out of within minutes if your child’s behavior isn’t in line with norms. Today, DPAC gave us a welcoming environment. We enjoyed a show and felt the support of DPAC staff and the other families surrounding us. Children around me were laughing and cheering.”

We thank DPAC, Duke Health, and SunTrust for making this experience possible for our families!

Find activities near you

Some movie theaters in NC now offer sensory-friendly shows; check with your local theater. AMC Theatres offers them in the Charlotte and Triangle areas, saying “we turn the lights up, and turn the sound down, so you can get up, dance, walk, shout or sing! Our Sensory Friendly Film program is available on the second and fourth Saturday (family-friendly) and Tuesday evenings (mature audiences) of every month.” Check their website for more information.

ASNC Chapters are another great resource for sensory-friendly activities as well as social events that are family-friendly with a welcoming atmosphere. A few examples:

Find events on our calendar; find a Chapter near you on our website.

And finally, be sure to join ASNC’s Facebook group, where events and activities from around the state are posted.

Chef Pepper Jack’s Food Drive

jack-food-driveWhen 17-year-old Jack Cullen began to notice people on streets holding signs requesting donations, food, or jobs, he started asking questions. He wanted to understand why they didn’t have food or jobs. He wondered whether they had homes or other belongings. The growing concern that Jack displayed led his Autism Support Professional, Holly, to ask him whether he would like to help people with these kinds of needs. Jack enthusiastically embraced the idea, and together, they began looking for ways that they could serve people whose most basic needs were unmet.

After doing their research, Jack and Holly chose to become involved with the local food bank, but it was in an old warehouse that did not have air conditioning, and the noise from the machinery was very loud. This environment presented a variety of sensory challenges that could have prevented Jack, who has Autism Spectrum Disorder, from becoming involved. But instead of allowing those barriers to limit Jack, Holly helped him find a different approach. Instead of doing work inside the food bank, after food was already collected, Jack worked with Holly on a plan for his own food drive. This allowed him to collect and sort the food in a suitable environment, before delivering it to the food bank.

Together, Holly and Jack created flyers and collection bins for the food drive. Jack named his endeavor Chef Pepper Jack’s Food Drive, based on his favorite game, Skylanders. Holly coached him on how to talk to family, friends, and community members to solicit donations. He passed out flyers and set up collection bins, and it wasn’t long before donations starting coming in! As his box filled, he sorted the donations, loaded the boxes into the car, and, with Holly’s help, took them to the food bank. Jack also sent handwritten thank-you cards to friends and family who had made donations.

So far, Jack has made three trips to the food bank, with his biggest donation weighing in at 120 pounds! Jack’s original goal was to collect 500 pounds, but when asked whether he plans to keep the food drive going, he answered, “Yes! Absolutely!”

The Autism Society of NC provides a variety of community-based services that enable individuals with ASD not only to receive the day-to-day support they need and to gain valuable skills, but also to find and engage in opportunities to become involved in their communities in a meaningful way. Jack’s story is just one example of how ASNC is committed to empowering individuals to connect with others and achieve goals that bring them personal satisfaction and purpose. Learn more here or contact us at 800-442-2762.