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.

Looking for a Place to Belong? Join an ASNC Chapter

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Pender County Chapter

Fall is a great time to join one of the Autism Society of North Carolina’s 50 Chapters and Support Groups around the state. The beginning of the new school year also marks the restart of the groups’ activities and events.

ASNC’s Chapters and Support Groups are led by generous parents or family member volunteers who join together with other concerned individuals to create a welcoming and inclusive community of support for individuals with autism and their families. “So many of our members tell us how happy they are to finally have somewhere to turn and how good it feels to not feel alone,” said Amy Irvin, mom and a member of the leadership team for the Sampson County Chapter.

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Robeson County Chapter

Emily Green, a member of the Forsyth County Chapter said, “I consider these people my truest friends. I can trust them to watch (and understand) my kids or ask them for information about services, extracurricular activities, or medical advice. I love being part of such a supportive and accepting group of people that always have an answer, a suggestion, or know where to point you to help find one.”

If you live in one of the following areas, you can take part in one of our new or revitalized Chapters and Support Groups: Caldwell County, Halifax County, the High Country (Ashe, Alleghany, Watauga and Wilkes counties), Lee County, Macon County, Rowan County, Wayne County, or Wilson County.

Kristi Ford, Leader of the new Lee County Support Group, said the group has been planning meet-up events and playdates to get together regularly. “For this year, I’m most excited about seeing us mold together as a group, see friendships form, and for our children to become playmates,” she said. “Living a life of autism can be isolating for the whole family, so I hope we can reach families in our area to let them know that there are others walking the same journey and we can all have fun together.”

Jennifer Clapton, leader of the Halifax County Support Group, said, “We are excited about growing as a new chapter and increasing parent involvement. We also are very interested in offering ongoing social outings for our kids.”

Malinda Pennington said the Wilson County Chapter is excited about its second year. “We want to be able to support the unique needs of every family such as those with girls on the spectrum, young children school-age children, and adolescent/ adults with autism.”

No matter where you are, click here to find a group near you, or check out our online calendar to see events.

 

Q&A with Dr. Jed Baker, Autism Expert

 

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On Friday, November 4, Dr. Jed Baker will lead a daylong conference that touches on two very important topics for families and caregivers: managing frustration and anxiety and teaching social skills. Dr. Baker graciously shared some insights and previewed his talk in a Q&A recently.

 

Why is it important for caregivers to think about managing their frustration and anxiety levels when interacting or working with their child or student?

We fight fire with water. To respond intelligently and with understanding to a challenging situation requires us to manage our own emotions as caregivers. Our own reactivity can hijack our better judgment and escalate the problem rather than resolve the issue.

Everyone experiences anxiety and frustration. How does the experience differ for those on the autism spectrum?

Social perception, sensory, language, and learning issues can make many situations more confusing, unexpected, and frustrating to those with autism. Difficulty transcending the moment can make a temporary problem, like not getting to play a videogame, seem like a life-threatening crisis.

You provide concrete strategies that address anxiety and frustration in caregivers and children with autism spectrum disorder. Can you provide a preview of one example?

Preventing frustration depends on understanding how an individual perceives a difficult situation. For example, not getting to do a desired activity can seem like an unbearable issue. Providing a timer or visual schedule can help an individual know he will get what he wants, allowing him to wait more calmly.

As another example, anxiety about confusing classwork can make kids feel ashamed and afraid to try. Learning how to undo the shame of asking for help and disentangling it from judgments about intelligence can free students to more calmly approach challenging work in an effort to grow.

The conference also addresses social skills, including skill acquisition and motivation to use social skills. What’s the difference?

Acquisition strategies refer to ways to teach skills. We need to pick strategies that match an individual’s language ability. Teaching a skill does not ensure the individual wants to learn or use the skill. Motivation refers to “what’s in it for the individual” to learn and use the skill. Sometimes we use external rewards like favored activities or objects as rewards for using a social skill. Yet more importantly for motivating socializing are natural rewards like wanting a friend or making the interaction so much fun the individual wants to interact.

The social skills portion of the day also spends time focusing on peer interactions, creating acceptance, and reducing bullying. Why are these three things so important?

Socializing is a two-way street. We cannot try just to get those with ASD to fit in but also to get others to reach out. And all students have a right to a safe and accepting environment. One key to anti-bullying is to empower the peer community to police itself with upstanding peers.

Want to learn more? Join us on November 4 in Raleigh. To learn more about the conference and register, click here. The ASNC Bookstore will also be at the event with Dr. Baker’s numerous books. Register soon; the early bird price is valid through midnight October 16.

Kids Loved and Accepted as They Are at New Camps

 

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Parker and a friend at ASNC’s Carteret County summer day camp

Six-year-old Marshall Wingfield loves people, but he becomes overwhelmed in public and has always been a bit of a homebody, his mom says.

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Marshall loves video games

“He wants so much to fit in and have friends,” said Elaina Wingfield of her son, who was diagnosed with autism last year during his kindergarten year. “But his challenges make that very difficult. He doesn’t understand personal space, proper speech volume, or the social cues that come natural to us.”

This summer, Marshall found a place where he could make friends and be himself: ASNC’s new Greenville summer camp. “This is the first place he’s ever been that he wants to come back every day,” his mom said. “Marshall made friends that he wouldn’t have met otherwise. He felt confident attending the camp.”

fb_img_1472247633436Marshall liked it so much that he is attending the new afterschool program, as well. “It’s quiet, and they know how I am,” he explained to his mother when she asked why he wanted to go. After camp, he didn’t have to spend hours decompressing at home as he does after being in other environments, such as grocery stores, Elaina said. And they have a pool; one of Marshall’s favorite activities besides Minecraft is swimming. “He knew when they would go and how many days he’d have to wait,” she said.

The new programs in Greenville are part of an array of Social Recreation programs in four Eastern NC locations made possible by funding from Trillium Health Resources. The initiative supports children and adults with autism through programs in underserved areas of the state, helping them to improve their social and communication skills, peer networks, and physical well-being.

Social Recreation Services Director Sara Gage said, “We want them to feel love for who they are. We like to provide an environment that understands them and gives them the opportunity to flourish just as they are.”

Summer Day Camp ran from 9 a.m. to 5 p.m. on weekdays with a counselor-to-camper ratio of 1:1 or 1:2 based on self-help and behavioral needs. Campers ages 4-22 enjoyed swimming, arts and crafts, gym time, and all of the typical camp activities in Greenville, Wilmington, Carteret County, and Brunswick County. “As a parent, I loved getting the many arts and crafts they did,” Elaina said. “He even colored! He colored! He hates to color!”

In addition to benefiting the individuals with autism, the programs help families by providing respite and care tailored to individuals with autism. “This camp meant peace of mind,” Elaina said. “Like so many parents of autistic children, we weren’t in a financial position to pay for a summer camp that could or would accommodate his needs. Anything extra we have these days is going to medications, co-pays, and deductibles.”

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For Parker Samples’ parents, the day camp in Carteret County meant they could both keep their jobs this summer. Parker is a goofy and funny 12-year-old, always seeking any attention he can get. But he also has trouble communicating his wants and needs, and this can lead to frustration and meltdowns. Parker has always had to be taken care of by a family member rather than going to a camp during his school breaks or an afterschool program with other children.

His parents have made many career decisions based on what is best for their son, from cutting their hours, to giving up overtime, to passing up better positions in favor of schedule flexibility. This summer, they planned for his father, Bud, to quit his job to care for Parker during the days and find another job at night.

But then Parker was accepted to the new day camp. Much more than saving their jobs, the camp made Parker happy. “I think his favorite parts of camp are all the people,” Bud said. “All the attention he gets from everyone, even when it disrupts what they are doing at the time, is always so positive.

“I really can’t convey how this summer has helped Parker and us at home, just knowing that there really are people who care and understand what these special kids need. It’s not just a place for them to go during the summer, it’s not just the pool and bouncy houses – which are awesome – it’s the people that you trust with your kid, to make sure they are happy and safe and more so understood.

“There are reasons that they act how they do sometimes, from fear to anxiety or maybe they just don’t like the color a wall is,” he said. “And this was a whole house of people that understood all of that, and more than just understood, they accepted it and Parker into their hearts.”

 

To learn more

For more information about ASNC’s Social Recreation programs, please go online to www.autismsociety-nc.org/socialrecreation or contact the director for your area:

  • Greenville: SRP_Greenville@autismsociety-nc.org
  • Wilmington: SRP_Wilmington@autismsociety-nc.org
  • Brunswick: SRP_Brunswick@autismsociety-nc.org
  • Carteret County: SRP_Carteret@autismsociety-nc.org

 

 

 

 

 

 

 

 

 

 

 

 

Succeeding with a Dedicated, Caring CSI

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We are republishing this article from the winter 2016 Spectrum in honor of National Direct Support Professionals Recognition Week. 

Alex Bagley has won many Special Olympics medals over the years at the county, state, and national levels. The 23-year-old from Fayetteville competes in 5-on-5 basketball, cycling, and aquatics. Alex, who has autism, is a hard worker and is dedicated to doing the best job he can, no matter whether it is housework, homework, volunteer work, or athletics, says his mother, Angela Bagley.

Alex new.jpgBut it is not just hard work that has helped Alex excel. His Community Skills Instructor (CSI), Andrea Miller-Weir, has supported him for 11 years, setting goals beyond what others think is possible and helping him achieve them.

“If I had millions of dollars, it wouldn’t be enough to compensate her for her untiring efforts at making Alex the best he can be,” Bagley said. “She has tirelessly worked to ensure that he enjoys life to the fullest.”

And Alex does enjoy life! Athletics and physical fitness, which originally were challenging for him, are a major part of that life. “I couldn’t swim, play basketball, or ride a bike until I got Ms. Weir as my CSI,” Alex said. “I love working with Ms. Weir. She is nice, patient, she cares about me, and loves me. Ms. Weir is fun.”

“They can do whatever they set out to”

Weir said she began working with children with special needs as a substitute teacher in a middle school and found that she enjoyed it. “I was told I was very patient and caring with the children. So, when a job offer came my way to work with children with autism, I gladly accepted because I wanted to make a difference.”

Her mission as a CSI is “to improve the life of the person I am working with to their maximum potential, and to make them feel that they can do whatever they set out to,” she said.

Apr 2012-19 Apr 348.JPGWeir certainly has done that for Alex. When she met him, he wouldn’t even put his face in the water, Alex’s mom said, and now he has gold medals for swimming. Weir said, “I felt I was really making a difference when Alex rode his bike without me running behind him for fear of him falling and when he jumped in the water and swam two lengths of the pool and won the gold medal. I cried. It was his first time doing two lengths.

“I feel I am really making a difference when he says, ‘Ms. Weir, I am having fun,’ or ‘Ms. Weir, I like this!’  I look at Alex and he is happy.”

Back when Weir started working with Alex, he was having a tough time in PE with basketball, and his mom told Weir she wished he could improve. That small wish led Alex far beyond even Weir’s expectations. Weir began taking Alex to a recreation center after school every day and taught him how to dribble, throw, and shoot. Alex then joined a Special Olympics 3-on-3 basketball team for 11- to 12-year-olds, and eventually he moved on to a 5-on-5 team. “To make a long story short, his team was selected to represent the state of North Carolina in the Special Olympics national competition held in New Jersey. They even won the bronze medal in their division,” Weir said.

Working toward life goals

Now Weir is working on meaningful employment for Alex. About two years ago, she convinced a custodian to allow Alex to shadow him so he could learn his trade. Since then, Alex has done janitorial work in a couple of furniture stores. To overcome potential employers’ concerns about Alex’s capabilities, Weir created a portfolio about him and gathered letters of recommendation from previous supervisors. Weir hopes that Alex eventually will be able to work at assembling furniture.

Apr 2012-19 Apr 403.JPGAlex agrees that having a job is one of his top three goals in life; his others are to stay in good physical shape and to own a house. His mother hopes that he will continue to have strong faith in God and remain involved in his church. “Alex’s faith is a big part of his success,” Bagley said.

Weir said the most challenging part of her job is “getting others on board to see when I am trying to give Alex new and different experiences that are age-appropriate – wanting more for him. I ask myself, what are some things a 22-year-old would be doing? How would they be dressing? How would they be acting? What would they be participating in?”

Bagley said Weir’s complete dedication to Alex has made her like a second mother to him.

“She treats Alex as her son – she is firm where she needs to be, kind, and compassionate,” Bagley said. “As a working, divorced mom, I know that I would not have been able to provide Alex with the expertise that he’s received from Ms. Weir.

“Ms. Weir has been instrumental in reinforcing what Alex learned in preschool and at home, and she taught him skills that he would have likely taken many months, if not years, to learn. She’s taught him how to do laundry, to include sorting clothes; how to wash dishes; how to clean the bathrooms; how to dust and vacuum.

“Ms. Andrea Miller-Weir is worth more to Alex and our family than anyone can imagine.”

ASNC applauds and expresses our gratitude to all direct support professionals and annually awards the John and Claudia Roman Service Award to an outstanding ASNC direct support employee. Read more here.