Understanding Autism with the Hula Hoop Analogy

hula-hoopsThis article was contributed by Nancy Popkin, Autism Resource Specialist in the Charlotte region and mom to a son with autism.

One of the keys to parenting, working with, or just hanging out with an individual with autism is to truly understand the core characteristics of autism. Applying these core characteristics enhances our understanding of why our child, student, employee, or friend might do some of the things they do. In doing this, we are able to anticipate challenges, develop strategies, and in some cases, find those extra ounces of patience that allow us to support them when challenges arise. Over the years, I have developed something I call “The Hula Hoop Analogy” to help me teach others to understand the individuals with autism in their lives. Not only does this help me explain aspects of autism to others, but it has allowed me to help my son understand himself. Here’s how it goes:

Imagine that every person with autism has an invisible Hula Hoop™ around themselves. They are in the center of the Hula Hoop, and everything inside the Hula Hoop matters to them. Everything outside of Hula Hoop, not so much. And this makes sense, because the root of the word autism is “auto” which means “self.” This is not to say that individuals with autism are selfish, but their perspective of the world is sometimes or often limited to their own perspective. And this helps us understand one of those autism characteristics. Individuals with autism, to varying degrees, struggle with taking the perspective of another. They have difficulty understanding how their actions may affect someone else. And this is because of this invisible Hula Hoop.

This thinking can be applied to help us understand other core characteristics of autism. For instance, we know that individuals with autism benefit greatly by having a visual schedule or visual cues to help them navigate their world. Often though, consideration is not given to the location of the schedule. To be effective, it must be within the invisible Hula Hoop for that individual. This is why, if the schedule for a classroom is in the front of the room for all students to see, the student with autism may not know it applies to them and will not attend to it. The schedule might need to be on their desk or on a notebook. At home, the schedule and visual cues need to be where they will be processed effectively or where the task or activity takes place.

We can apply this analogy to understanding social differences, too. Individuals with autism often do not respond to their name unless you are very close. It is like we need to get in their Hula Hoop to get their attention. At school, if the teacher is talking at the front of the room, often the student with autism will not process what the teacher is saying. The teacher isn’t in the Hula Hoop, so it’s as if what they are saying doesn’t apply to the student. And sometimes, individuals with autism don’t recognize personal space. This may be because they feel like you need to be in their Hula Hoop to interact with them.

The size of the Hula Hoop will vary from one individual to another. It also might expand and contract depending on the individual’s abilities, stress levels, and environment. Individuals with autism often have difficulty processing a lot of information at once. If they are overwhelmed with information (sensory or otherwise), the Hula Hoop will get smaller, and they may not be able to attend to as much information as when they are calm. This is important to know when helping someone manage themselves when they are upset. If the tools and strategies used to help them regain their sense of calm are not in close proximity when the Hula Hoop contracts, it will be harder to get them calm. This is why many of the visual cues and other supports for someone with autism need to be portable and with them at all times.

Not only does the Hula Hoop Analogy apply to physical space, it also applies to temporal space and individuals’ ability to manage time. Imagine the Hula Hoop represents this moment in time. Individuals with autism are most comfortable living in the present. Thinking about the past might be uncomfortable for them and they might resist talking about past events. The exception to this is when reliving past events repeatedly as a way to stim.

But more significantly, this temporal effect has an impact on planning for the future. Individuals with autism are not good at thinking about what might happen in the future and planning accordingly. This affects things like figuring out what jacket to wear or whether to grab an umbrella for later. It affects planning what work to get done now and what to put off for later.

The good news is, with practice we can help an individual with autism expand their invisible Hula Hoop to take in more and more information, include more people, and anticipate what lies ahead. But we need to start this process where they are, within their Hula Hoop. And when issues arise, consider that maybe this invisible Hula Hoop has gotten in the way. That is when we step inside their Hula Hoop, with all the patience we can muster, to guide them into the future.

 

Nancy Popkin can be reached at npopkin@autismsociety-nc.org or 704-894-9678.

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.

’Tis the Season … for Opportunities!

 

Vickie Dieter is an Autism Resource Specialist in the Catawba Valley region and mom to a son with autism.

Many families who have children and other family members with an Autism Spectrum Disorder have a collection of war stories and battle scars (emotional and physical) associated with the holiday season. Children, youth, and adults with autism who already struggle with over-stimulation, change, and disruption are bombarded with a barrage of sights, smells, sounds, schedule changes, and challenging social situations during the holidays. While many families enjoy the holidays and find these sensory and social experiences exciting and pleasurable, they can cause increased anxiety and discomfort for people with ASD. But, as difficult as the season can be, the holidays offer unique learning opportunities for teaching your child coping, social, and academic skills.

The holidays were not pleasant for our child and family, especially during his first six years or so. I remember feeling helpless and desperate to do SOMETHING to make the holidays more tolerable. It helped me when I was able to shift my focus beyond the difficulties associated with the holidays and take a proactive approach to help my son have successful, positive experiences. Focusing my efforts on pinpointing the root of my son’s behaviors and researching strategies to help him cope in difficult situations helped me gain a sense of control. The perception I had of our family as prisoners of our son’s disability changed when the strategies I tried with him began to have positive results. Over time, my son became more and more engaged in holiday activities, and our family has enjoyed many traditions and celebrations with family and friends.

I hope the following ideas will help your child and family share a more meaningful and positive holiday experience:

Use visual images, objects, videos, songs, and foods associated with the holidays to explain abstract concepts and deeper meanings of holiday traditions and religious beliefs.

Use a nativity set to help your child understand the meaning of Christmas.

A dreidel can be used to explain a historical element of Hanukah.

Turkey, corn, and other foods (pictures, real food, or play food) can be used to represent the pilgrims and Native Americans coming together for the first Thanksgiving.

Incorporate the Kinara, a visual symbol of African history and heritage in discussions about Kwanzaa.

Help your child understand what other people are thinking and feeling through the use of social stories, books, and videos.

For example, the characters in Dr. Seuss’ How the Grinch Stole Christmas have exaggerated facial expressions that can make it easier for children to identify the characters’ feelings. When reading this book with your child, help him or her make the connection between the characters’ facial expressions and what they are feeling. Use the context of the story to discuss the reasons that the characters feel happy, sad, angry, afraid, etc. Talk about how the characters’ actions affect the feelings and thoughts of others in the story.

Use your child’s preferred interests to engage him or her in holiday activities.

For example, for a child who has a strong interest in tornados, you might modify The Night Before Christmas story to include a tornado that interferes with Santa’s flight from the North Pole.

If your child has an intense interest in flags, try to engage him or her in a game to match flags to their respective countries. Explore holiday traditions and practices of each country and compare how your family’s traditions and beliefs are alike or different from people in other countries.

Use holiday symbols and images to promote academic skills.

Sort unbreakable ornaments by color, shape, type, or category.

Label holiday items throughout your home with words written on sticky notes or post cards, e.g. Santa, tree, pumpkin, candle, gift, Zawadi, gelt.

Practice addition and subtraction using holiday objects as manipulatives.

Work on sequencing with pictures, objects, stories, etc. Drawing or building a snowman is a fun visual sequencing activity.

Strategies to teach coping skills

Employ strategies that have worked for your child in the past but are no longer necessary under normal circumstances. For example, if your child responded well to the use of visuals but has “outgrown” the need for them, consider trying visual schedules, cues, or gestures again to help him or her understand and prepare for unexpected, unfamiliar, or overwhelming situations.

Coping with sensory overload and changes in routine can be exhausting and stressful for individuals with ASD. Try to pay attention to “warning” signs that your child is feeling tired, anxious, or frustrated and use this opportunity to help him or her learn to ask for a break through the use of visual and verbal prompts, redirection, or calming strategies. Ask your child’s teacher what type of behavior management system is used in the classroom and try to use that familiar system or a modified version in other settings. The Autism Society of North Carolina Bookstore has some great books and videos about using visual supports to help your child recognize and manage his or her feelings and behavior. The Incredible 5 Point Scale is one of my personal favorites.

Learn to recognize when your child has had enough. All of the tricks in the book probably won’t help once your child reaches the dreaded point of no return – parents, you know what I’m talking about.

Happy Holidays!

Contact one of ASNC’s Autism Resource Specialists for additional information and resources. Vickie Dieter can be reached at vdieter@autismsociety-nc.org or 828-256-1566.

 

 

Surviving the Season: Tips to Help You Enjoy the Holidays

family-opening-christmas-gifts

This article was contributed by Wanda Curley, an Autism Resource Specialist in the Triad and mom to a son with autism.

The holidays are anticipated by many, yet when the temperatures cool and bells start jingling, we will all be likely to hear people around us talking about the added stress and strain they can bring to families as well. This can be doubly true for families with a loved one on the spectrum, who must then deal with the added stress of additional changes and transitions, crowds, disrupted or broken routines, and overwhelming noise and lights.

The main key to avoid frustration and help your loved one on the spectrum enjoy (or at least survive) the season is found in one word: PREPARATION! So, how do we prepare?

Know and assess

One of the first things we as parents must do is simply to know our child well and to assess the amount of holiday cheer that he or she can truly tolerate. Can your child tolerate the additional crowds at the local mall from late November through December? If not, then consider avoiding those days and make a plan to let them shop earlier in the year or at times during the season when stores are less crowded. Can your child handle seeing big changes in your home such as the sudden addition of the lights, Christmas tree, etc.? If not, then consider scaling back your decorations or adding them very gradually over a few weeks. This can also be a good way to involve your child in the process and allow him to take ownership of some customs and activities that he can enjoy. The more control that your loved one has over the extra activity of the season, the more tolerant and accepting of the changes they are apt to be. Make sure you give ample choices of holiday activities, including some calming, non-holiday options that are familiar and typical for them in their daily routines.

Plan ahead

Have a holiday season calendar prepared for your loved one in addition to their typical visual support systems. Mark the dates of the various holiday events, such as special concerts or dinner with extended family. Create a social story for the various events so that your child will know what to expect way ahead of time. You may even want to prepare a photo album with pictures of family and other guests who may be visiting your home, or of whom you may be traveling to visit during the holidays. Schedule looking at the photo album as a leisure activity on your child’s schedule, and that way your child will feel more familiar with people they don’t see as often during the year. Role playing and scripting of typical family situations during the holidays may go a long way toward relieving the added anxiety your loved one may feel during the season.

Provide an escape

Have a calming space set aside for your child that he or she can access whenever the hustle and bustle of the holidays gets to be too much. Teach your child self-management by using a break card or developing some type of cue for them to show when they are anxious and need some space to themselves. If you’re visiting in someone else’s home, this may be just a quiet room away from everyone where the lights can be turned down, soft music played, etc.

Duplicate favorite items

If you are traveling for the holidays, make sure that you have plenty of your child’s “favorites” on hand, including snacks, books, toys, sensory items, etc. You can also help by letting extended family or friends know about some of these items so they have them available as well. Many times, our family members and friends feel just as helpless as we do in difficult situations, so they will be happy that you have not only educated them on your child’s needs but also allowed them to be part of the solution. If you must travel by plane, use social stories and visual supports to make sure your child is prepared for any delays, as well as what will actually occur during the boarding and flying process.

Be flexible and “let go” when needed

Many of us have happy memories of past holidays and thus make expectations for the season that can be hard to meet provided the difficulties our loved ones may endure during this busy time. Perhaps you have always traveled instead of staying at home, or had a custom of exchanging and opening all gifts on Christmas Eve or Christmas morning. Don’t be afraid to “change things up” if you need to do so to make it easier on your child and your entire family. Perhaps you need to start a custom of opening just one gift per day to help prevent your loved one from being overwhelmed. In our family’s case, our son with autism has never truly enjoyed the unwrapping of gifts, so we started a custom of making him a nice big gift bag with all of his gifts together. He can pull them all at the same time, or he can take his time and pull out one at a time without having to unwrap anything. He much prefers this process, and we have seen him become much less anxious now as a result of this one change we made for him.

Does your child not enjoy the concerts or other crowded events of the season? Opt for unconventional or quieter activities that can be enjoyed by just your family. One of our newest traditions is to enjoy a light show together by car. Just a handful of us are in the car, and we can adjust the sound as well as bring along some of our favorite holiday treats to share. Don’t feel guilty about having to let go of some time-honored traditions or customs. Make new ones that are more comfortable for your family, and don’t stress about those things that are difficult to access now. Our children on the spectrum can often sense our anxiety and frustration, which may then lead to their own, so it’s important to find time to take a breath and “de-stress” ourselves as well.

The holidays truly are a wonderful time of year, so don’t hesitate to begin new traditions and customs as needed. Think “outside the box” and finally … try to RELAX AND ENJOY!

Wanda Curley can be reached at 336-333-0197, ext. 1412, or wcurley@autismsociety-nc.org.

 

To Learn More

 

The ASNC Bookstore has some recommended resources for you:

Boy and a Bear: The Children’s Relaxation Book by Lori Lite

Why Does Izzy Cover Her Ears? Dealing With Sensory Overload by Jennifer Veenendall

Picture This: Places You Go/Things You Do, a CD Rom with pictures of modes of travel to add to visual schedules

Books to help friends and relatives understand autism:

Can I Tell You about Autism? by Jude Welton

Grandparent’s Guide to ASD by Nancy Mucklow

A Friend’s and Relative’s Guide to Supporting Family with Autism by Ann Palmer

Managing Frustration and Anxiety

 

baker

Dr. Jed Baker, noted autism expert and author, shared some of his expertise with parents and professionals last week at a one-day conference in Raleigh. His presentation was titled “Managing Frustration and Anxiety and Teaching Social Skills” and provided strategies for individuals with Autism Spectrum Disorder, ADHD, anxiety, mood disorders, and learning challenges.

For those who could not attend, we are sharing highlights of the portion of Dr. Baker’s presentation on managing frustration and anxiety. You can also learn more with his award-winning books, available in the ASNC Bookstore at www.autismbookstore.com.

Keep Your Cool

Dr. Baker’s first tip was that caregivers must learn to control their own emotions. “If you can be cool, you can get someone else cool,” he said. Reacting to someone having a meltdown by either giving them what they want or forcing their compliance is not effective, he said. Giving in doesn’t last; it feels good in the moment but has disastrous long-term consequences. Getting angry comes from not feeling respected. Caregivers can use fear and unpredictability to scare individuals into complying, but in the long run, the individuals don’t trust you anymore, they don’t want to be in your home or class, and they will not like you, he said.

“90 percent of teaching and parenting is tolerance,” Dr. Baker said. Caregivers must tolerate their own discomfort long enough to think about what to do and not give in or get angry.

So how do caregivers control their own emotions? Number one, by having hope! Tthink of challenges as a temporary issue that can be fixed, not a character flaw. Know that things will get better eventually as long as you stick to strategies. Studies have shown that parents who are optimistic stick to strategies and therefore bad behaviors lessen over time.

Two other things to keep in mind when attempting to control your own reactions: Realize that the individual’s behavior is not intended to challenge your authority but is rather a reflection of their lack of coping skills. Also, do not worry about what other people think. Most observers understand that a child having a meltdown in public is not a reflection of your competence, and they do not blame you. You can gain respect by controlling yourself, not the child.

Lastly, be sure to take care of yourself and maintain balance in your life. What are you doing to make yourself happy? Dr. Baker suggested trying yoga, meditation, and exercise as great ways to reduce your own stress and enable yourself to maintain control of your emotions in the face of meltdowns.

Build a Positive Relationship

The first step to managing an individual’s behavior is to build a positive relationship, Dr. Baker said. It is very important for children to know that adults around them actually do care about them; show warmth and caring.

Ensure that the individuals know what is expected of them by using structure, visual supports, and differentiated instruction. Fair is giving everyone what they need, not teaching everyone at the same level, Dr. Baker explained.

You can also build confidence through the 80/20 rule. Enable individuals to succeed by starting with tasks or lessons they already grasp, then move on to new or more difficult material for the last 20 percent. If you start with the difficult material, they will feel defeated, Dr. Baker said. If you don’t let them make a mistake or fail the first eight times, they will believe they can succeed.

And finally, avoid power struggles. For example on homework, allowing breaks or limiting the amount of time they spend on it is not giving in, it is managing the work. You could also try doing the work with them or doing the first problem for them.

Manage Crises

When an argument, meltdown, or crisis does come up, first be willing to take some time to manage it. Listen to their side of the situation, agree, and apologize when necessary. Show some sympathy; there is always a kernel of truth in why they are acting out. Then collaborate and ask them “what do you want? Let’s find the right way to get that.”

If the individual is too distraught to use logic or reason, try to distract them and change their mood or focus with novel items, special interests, or sensory activities. Dr. Baker said that when he is working with individuals on the spectrum, he always keeps his pockets full of things he can use to distract them. Distraction is not rewarding the behavior as long as you don’t give them what they were having a tantrum over. If the individual is trying to avoid a task, distraction helps them avoid it, so give them a legitimate way such as taking a short break or breaking the task into pieces.

Once the crisis is over, make a plan for next time.

Work on Repeat Behavior Problems

If the individual is repeating unwanted behavior, explore why it happens. Observe and keep a journal so that you know what happened before, during, and after the behavior. The difficulty is that causes for the behavior come before the behavior, when you might not be paying attention. But with practice and time, you should be able to discover the trigger for the behavior.

Some of the typical triggers Dr. Baker listed were:

  1. Internal issues – hunger, exhaustion, illness
  2. Sensory issues – noise light, touch, overstimulation, boredom
  3. Lack of structure – not enough visual supports to give expectations
  4. Challenging or new work, feared situations
  5. Having to wait, not getting what one wants, disappointments
  6. Threats to self-esteem such as losing, mistakes, criticism
  7. Unmet wishes for attention – being ignored, wanting others to laugh

Once you have data on the trigger(s), you can develop a prevention plan. Dr. Baker mentioned his No More Meltdowns app that will help caregivers keep track of behaviors. The app allows you to upload to www.symtrend.com/nmm, which will analyze data and give you a prevention plan.

A good behavior plan will change or remove the triggers as much as possible, teach the individual skills to deal with the triggers, and reward new skills. If the individual is not already frustrated, you can also use a loss system when they do not use new skills to deal with the triggers.

Demands for Work

When an individual is frustrated by demands for work, there are several ways you can change that trigger. First, model and prompt rather than test. This goes along with the 80/20 rule mentioned previously. “Teach” them something they already know first, so they succeed. You also can give them a choice of which work they do, or use their special interests to make the work more appealing. Visual supports, such as instructions, outlines, and labels are helpful for many individuals. Finally, try reducing the length of time and using a timer so they can see how long they must keep doing the task.

To help individuals deal with demands for work, teach “trying when it’s hard,” Dr. Baker said. For some individuals, the fear of the work is the trigger, and this can be overcome with gradual exposure. Get them to try a small portion of the work. Teach them to ask to watch first or to ask for help. Tell them that they may take a break for a certain amount of time and then come back to try again. Finally, be willing to negotiate how much they do (unless you know you are working with an individual who will keep negotiating, which Dr. Baker referred to as a “congenital attorney,” much to the audience’s amusement).

Dealing with Fear

Some individuals fear situations that can just be avoided, but many must face their fears because situations cannot be avoided. Start by persuading these individuals that they must deal with their fears. Talk about their strengths and their optimistic future, and then bring up that they should deal with their fears so that the challenge is not in their way anymore. It can be a relief for them to learn that they do not have to change fundamentally, they just have to make it so that the challenge does not stand in the way of their success, Dr. Baker explained.

Then explain anxiety and true vs. false alarms. Being anxious means that the brain lies to you and makes you afraid all the time, rather than just keeping you out of true danger, he said. Help them to think like a scientist and do research on their fears. For example, if they wash their hands constantly because they are afraid of germs, they should research the likelihood of contracting a disease. Let them convince themselves through logic that their anxiety is overblown.

You can also try gradual exposure to their fear. A visual aid of a fear ladder with rungs of exposure can allow for rewards as they reach each rung.

To reduce individuals’ overall anxiety, add exercise, mindfulness meditation, and relaxation techniques. Dr. Baker recommended the resource www.fragrantheart.com. Focusing on the moment means they are not worrying, and it recharges and re-energizes, he said. The best time for many is at night, because they are less occupied, and so that’s when all the worries come out.

Finally, if anxiety is debilitating and other methods are not working, Dr. Baker said neurofeedback and medication can be useful options.

Waiting, Accepting No, Stopping Fun

Dr. Baker offered several strategies for individuals who have meltdowns because they are unable to wait, accept no for an answer, or transition away from preferred activities. A visual timer can help them understand how long they will have to wait or when they must start a new activity. A visual schedule also helps with transitions. “Prime ahead” by discussing what they will gain by waiting or accepting no, and talk about disappointments that might occur during an upcoming period.

Help them accept no by providing what they want or something else that they want at a later time. Use a reward system such as a “disappointment poster” and give them points for waiting, accepting no, and stopping fun.

Self-esteem: Mistakes, Losing, Teasing

For individuals who are upset by losing or mistakes, again the 80/20 rule is useful, Dr. Baker said. Let individuals win or succeed 80 percent of the time to build up goodwill. You also can talk ahead of time about mistakes that might occur but remind them that mistakes help us learn and grow; if you are not making mistakes, you are not trying new things or learning.

For teasing, first protect the individual as much as possible by surrounding them with supportive peers. Peer buddy programs have been shown to be a very effective method of building children up and preventing teasing. When teasing does occur, help them to check it out first to make sure they understood correctly. Perhaps it was not meant to be teasing. Teach them that when they are teased, they should calmly ask the person to stop, showing that the teaser did not get to them and does not control them. If the person does not stop, they should report the behavior.

Unmet Needs for Attention

Some individuals act out to gain attention. To change this trigger, you can schedule attention or special time for the individual so they know they will get it. In the classroom, for example, you could use a timer to count down to when they may speak with the teacher rather than calling out in class. Dr. Baker also recommended looking for appropriate outlets for the individual, such as theater or standup comedy.

Also, teach the individual about positive ways to get attention, stressing that they want to be liked, not just gain attention. Teach them about public vs. private topics, and if in a classroom or other group setting, try to get peers in on it — if the peers laugh when the student says something inappropriate, that is a reinforcement of the negative behavior. Teach the individual the “rules of comedy”: Don’t make fun of vulnerable people. Use slapstick, random thoughts, and self-deprecation.

Sensory Needs

For individuals who engage in self-stimulation such as drumming, flapping, or chewing for sensory needs, you can try to change the triggers by avoiding boredom such as waits or group activities in which they are not engaged, or by modifying frustrating work.

Skills you can teach them include alternative ways and times to self-stimulate and how to be a self-advocate for a better environment, Dr. Baker said. Individuals need to know to ask for what they need, such as less noise or more interaction. On the other hand, they need to know they have a right to the environment that works for them but can’t impose it on everyone else. If they need it quieter, they can ask people nicely, and if they don’t get it, the individual should ask to leave and take a break.

Self-Calming

Dr. Baker also discussed ways to prepare for unexpected triggers. Collaborate with the individual on ways to distract and soothe themselves in the case of upsets. Have them compile a folder of relaxation techniques. Establish safe people whom they can turn to when they need support. Teach them this self-talk: “All problems can be solved if you can wait and talk to the right person.”

Jed Baker, Ph.D. is the director of the Social Skills Training Project, an organization serving individuals with autism and social communication problems. He is on the professional advisory board of Autism Today, ASPEN, ANSWER, YAI, the Kelberman Center and several other autism organizations. In addition, Dr. Baker writes, lectures, and provides training internationally on the topic of social skills training and managing challenging behaviors; he was the keynote speaker at ASNC’s 2015 annual conference.

 

ABLE Accounts Coming in Early 2017

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

Individuals with developmental disabilities and their families have been eagerly anticipating the availability of ABLE savings accounts, which allow a person with a disability to save for critical expenses while still allowing eligibility for means-tested disability supports and health care. North Carolina has looked at the options and resources available to operate an ABLE account program and has determined that the best approach is to join a consortium of other states to keep costs lower and still provide good value and customer service for account-holders.

Under this consortium of states, ABLE accounts should start to become available in early 2017, according to information presented to advocates from the ABLE Board of Trustees and the NC Department of the State Treasurer. This statement presented at the last NC ABLE Board of Trustees meeting outlines the board’s decision to participate in the 11-state group. You can learn more about ABLE accounts and sign up for information at the NC Department of the State Treasurer.

With recent changes to federal law, you are no longer required to open an account in the state where the individual with the disability resides; you can open an account in any state that offers them! The Arc of the US is tracking ABLE implementation and which states are operating accounts; see the results here. Please note that some states may be offering accounts only to state residents, an individual can have only one account at a time, and fees may apply for accounts to be rolled over into new accounts should you want to move them to another state later.

 

Background

In August of 2015, legislation authorizing ABLE accounts passed the General Assembly and was signed into law by the governor. The Achieving a Better Life Experience (ABLE) Act, a federal law signed in December 2014, will give many individuals with disabilities, including those on the autism spectrum, and their families the opportunity to save for the future and fund essential expenses such as medical and dental care, education, community-based supports, employment training, assistive technology, housing, and transportation. The law allows eligible individuals with disabilities to create “ABLE accounts” that resemble the qualified tuition programs, often called “529 accounts,” that have been established under that section of the tax code since 1996.

By saving for and funding critical daily expenses, ABLE accounts will give North Carolinians with disabilities increased choice, independence, and opportunities to participate more fully within their communities. Without these accounts, people with disabilities have very limited ways to save, and any savings may prevent them from accessing other needed programs and services.

Key Characteristics of ABLE Accounts

  • An eligible individual may have one ABLE account, which can be established in any state that offers ABLE accounts.
  • Any person, such as a family member, friend, or the person with a disability, may contribute to an ABLE account for an eligible beneficiary.
  • An ABLE account may not receive annual contributions exceeding the annual gift-tax exemption ($14,000 in 2016). A state must also ensure that aggregate contributions to an ABLE account do not exceed the state-based limits for 529 accounts.
  • ABLE accounts are investment savings accounts and monthly fees are typically charged for account management. Compare fees and services across states before choosing where to open an ABLE account.
  • An eligible individual is a person (1) who is entitled to benefits on the basis of disability or blindness under the Supplemental Security Income (SSI) program or under the Social Security disability, retirement, and survivors program OR (2) who submits certification that meets the criteria for a disability certification (to be further defined in regulations). An eligible individual’s disability must have occurred before the age 26.
  • Qualified disability expenses are any expenses made for the benefit of the designated beneficiary and related to his/her disability, including: education, housing, transportation, employment training and support, assistive technology and personal support services, health, prevention and wellness, financial management and administrative services, legal fees, expenses for oversight and monitoring, funeral and burial expenses, and other expenses, which are approved by the Secretary of the Treasury under regulations.
  • Tax treatment: Earnings on an ABLE account and distributions from the account for qualified disability expenses do not count as taxable income of the contributor or the eligible beneficiary for purposes of federal tax returns. Contributions to an ABLE account must be made in cash from the contributors’ after-tax income.
  • Rollovers: Assets in an ABLE account may be rolled over without penalty into another ABLE account for either the designated beneficiary (such as when moving to another state) or any beneficiary’s qualifying family members. At this time, college savings 529 accounts cannot be rolled over into ABLE accounts.

 

Federal Treatment of ABLE Account under Means-Tested Programs, Including Supplemental Security Income and Medicaid

  • Means-Tested Programs: Assets in an ABLE account and distributions from the account for qualified disability expenses would be disregarded when determining the designated beneficiary’s eligibility for most federal means-tested benefits.
  • Supplemental Security Income (SSI): For SSI, only the first $100,000 in an ABLE account will be disregarded. Assets above $100,000 will count as resources under SSI. If the designated beneficiary’s ABLE account balance exceeds $100,000, the individual’s SSI benefits will not be terminated, but instead suspended until the individual’s resources fall below $100,000. It is intended that distributions expended for housing will receive the same treatment as all housing costs paid by outside sources.
  • Medicaid Eligibility: A beneficiary will not lose eligibility for Medicaid based on the assets held in an ABLE account, even during the time that SSI benefits are suspended (as described above for an account over $100,000).
  • Medicaid Payback Provision: Subject to certain limits and upon a state’s filing of a claim for payment, any assets remaining in an ABLE account upon the death of the qualified beneficiary must be used to reimburse the state for Medicaid payments it made on behalf of the beneficiary. The amount of Medicaid payback is calculated based on amounts paid by the beneficiary as premiums to a Medicaid buy-in program.

 

The Autism Society of North Carolina has supported the development of ABLE accounts, which will be another tool that families and individuals can use to create opportunities to enhance their lives. We will provide information to the public about how to access them as it becomes available. Please check the ASNC blog, website, and social media outlets for updated information and other helpful resources.

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.