Learn More about ASNC with New Podcasts

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Online interviews explore issues faced by the autism community in North Carolina, provide information about the Autism Society of North Carolina’s services and supports, and share personal stories.

If you have a smartphone, you probably use it for more than phone calls. Today’s technology enables us to use our phones to listen to music, watch movies, track our health, play games, and much more. One of the ways that many organizations are sharing information is through podcasts or online audio. The Autism Society of North Carolina (ASNC) recently joined this growing community with a SoundCloud feed.

What does all this mean? If you are over 40 years old, the easy answer might be to ask your kids or a millennial coworker to explain it, as they are likely more plugged in to this medium. But, if you prefer not to go that route, here’s a simple answer: Our feed is like a radio broadcast that can be listened to at your convenience. You can stream it while sitting at the computer or download it and listen during your commute or workout. You can also subscribe to receive notifications when we add new episodes.

We are doing this because now, more than ever, it’s important to have information at your fingertips. Being online with portable media that you can hear and share with other families and friends is important to increasing understanding of autism, the issues that are affecting the NC autism community, and how ASNC helps.

It’s an exciting first step in adding digital content to the web that will help self-advocates, parents, professionals, and the public. This builds on other digital initiatives including the live webinars facilitated by our Autism Resource Specialists. (Click here to see the workshop schedule and look for “webinar” in the title.)

We have plans to add more episodes in the coming year, so please take a few minutes to explore and listen. If you have ideas for topics, please email me at dlaxton@autismsociety-nc.org.

Now, for a brief tutorial on how to access our broadcasts.

  • Option 1: On your computer, smartphone, or tablet device, go to https://soundcloud.com/autismsocietync. From here you can see all the episodes and topics we have uploaded. Click on what you want to listen to and enjoy!
  • Option 2: Download the SoundCloud app for your device from the iTunes or Google Play stores. (It’s a free download.) Create an account and then search for “AutismSocietyNC.” Our stream will appear and you can “follow” us to receive updates and new episodes.
  • Need help? Contact us at info@autismsociety-nc.org.

Thanks for reading. Happy listening!

The Power of Reinforcement

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This article was contributed by Leica Anzaldo, Training Manager for the Autism Society of North Carolina.

As I was sitting in the classroom today watching a child I work with tear up his fifth math worksheet, my brain immediately went into functional assessment mode. This was an obvious one: escape. But why was he trying to escape an activity that he already had in his skill repertoire? This kid hates doing independent work. Even when he has the skills and can perform the task, the request to him is daunting, stressful, and “horrible.” What happens when you tear up your work? You escape the task, even if it is only for a few moments. How do adults usually respond when a student tears up work? They ask questions about why the student is doing that or simply say “don’t do that,” not answering any of the questions the child has in his mind: How much do I have to do? When are you going to check in with me? What do I do if I can’t figure it out? Who is going to help me? What is the payoff for me doing this in the first place? Let’s first think about what core skills this child may need to work on: responding to instruction, functional communication, and tolerating delay of reinforcement.

If a child or adult is demonstrating a negative behavior on a regular basis, that behavior is most likely being reinforced. In the example above, the reinforcement was that he got to escape the work. What socially appropriate behavior could I teach instead that would result in the same reinforcement? In other words, how could I teach him a better way to briefly escape the work? And then in time, how could I teach him – when escape is not an option – how to tolerate a delay in reinforcement? The goal here is for this child to let me – and later his teacher – know when he doesn’t feel like he can do something and needs a break; this would be functional communication. Being able to ask for a break and having that request honored is extremely powerful. Being able to wait and tolerate non-preferred activities or delays in reinforcement is extremely important in all settings. So, we are working on three goals in this situation: increasing use of functional communication (asking for a break); increasing time on task (moving toward task completion); and tolerating delays in reinforcement.

To teach this skill, we needed to first set up activities that would evoke escape behaviors. Sounds crazy, but how else would we have multiple opportunities to teach the response we want? For this child, it meant presenting him with activities that are less preferred, such as worksheets and writing tasks, and focusing just on the functional communication target. Research shows that children and adults who can effectively use functional communication demonstrate fewer negative behaviors. Keep in mind, functional communication does not have to be verbal but rather a communication method that works for the person: gestures, visual, tablet, object, etc.

The independent work we presented was not complex, but rather work that we knew he had the skills to complete. Before beginning the activity, he was verbally/visually shown two ways he could let us know he wanted a break, staff modeled them, and he practiced them: 1. Ask “can I have a break?” or 2. Put the work in his folder labeled “break.” Target 1 was harder but more desirable, so it triggered a higher level of reinforcement: a break and access to his small firetruck and action figures for one minute. Target 2 was a bit easier for him because it did not involve using language, so the reinforcement was milder: he had the task removed for one minute. This strategy was included in every trial with reinforcement being timely and consistently applied. Any attempt to tear up the activity was blocked, the activity was removed, and no reinforcement was delivered. The student was then presented with an alternative activity that did not have a history of producing negative behaviors but was not highly preferred for up to three minutes before the less preferred activity was presented again. After several sessions, the child was consistently requesting breaks and not demonstrating negative escape behaviors. It should be noted that he did require some guidance during the work itself, and an adult was always accessible.

This child was using functional communication at the desired rate, so at this point, we began procedures to delay reinforcement. Before beginning these procedures, we practiced how to respond when you can’t get your break. The staff first modeled how to respond, then role-played with the child. For example, when you ask for your break and your teacher says “do two more problems,” take a deep breath, look at her, and say “okay.” Every time the child did this during role play, social reinforcement was delivered. This was then added to the trial with the delay being systematically expanded from one additional problem or sentence, to two, to three, etc. We are currently at a two-problem delay, and the child is tolerating this (as measured by no additional escape behavior being demonstrated and the child restarts work) about 50% of the time.

We are well on our way to success, and I am excited to see the long-term impact of his learning. The use of functional language and ability to tolerate a delay in reinforcement can get him better results. These skills can and will be generalized to other activities, environments, and people. I hope that you will consider how these procedures could apply to a behavior problem you are facing and am interested to hear your experiences.

Leica Anzaldo can be contacted at 704-894-9678, ext. 1603, or lanzaldo@autismsociety-nc.org. ASNC’s Clinical and Training Department staff is composed of PhD and master’s-level licensed psychologists, Board Certified Behavior Analysts, and former special education teachers. We provide individualized intensive consultation using evidence-based practices to support children and adults across the spectrum in home, school, employment, residential, and other community-based contexts. We also deliver workshops to parents and professionals on a wide range of topics including but not limited to strategies to prevent and respond to challenging behaviors, best practices in early intervention, functional communication training, and enhancing social understanding in individuals with autism.

Have Your Say on Innovations Waiver

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This article was contributed by Kerri Erb, ASNC’s Chief Program Officer.

The North Carolina Department of Health and Human Services (DHHS) has published the draft application to renew its Home and Community Based Waiver (HCBS/Innovations, formerly known as CAP) for people with intellectual and developmental disabilities (IDD). This is known as the Innovations waiver. DHHS is seeking public comment and feedback on changes made and needed to the waiver. After processing public comments, the state will continue the steps necessary to submit the application to the federal Centers for Medicare & Medicaid Services (CMS) for approval. Once CMS approves the waiver renewal application, DHHS will begin implementing the changes.

Click here to read the draft: INNOVATIONS WAIVER AMENDMENT APPLICATION

The waiver program allows people who are eligible to receive Medicaid services through an intermediate care facility (ICF MR) to instead utilize those services in home and community settings. See ASNC’s toolkit or the DHHS website for further information on the waiver itself.

DHHS has spent the past year listening to feedback on needs in the IDD community through stakeholder groups and listening sessions. Those results can be found here, and elements of needs are showing in the renewal waiver that attempts additional flexibility, predictability, and sustainability.

ASNC and many other stakeholders, including families, participated in the advisory committees and made comments throughout the draft period. Not all have been reflected, though several have been. If you have thoughts about the waiver, please take the time to review the proposed changes and submit public comment by midnight July 13, 2015: Comments may be submitted via email to SVC_DHHS.IDDListeningSessions@dhhs.nc.gov. (See below for explanation.) 

UPDATE – ASNC received the following notice from the Division of Medical Assistance (DMA) with DHHS on July 8: It has come to our attention that some comments regarding the NC Innovations Waiver amendment may not have been transmitted to DMA. If you submitted a comment prior to July 8, please resend it to:  IDDListeningSessions@dhhs.nc.gov. Comments may also be submitted by leaving a voice-mail message at 919-855-4968. To ensure adequate time is provided, the public comment period is being extended through August 7 at 12:01 a.m.

As soon as the Autism Society of North Carolina has more information about the implementation plan, we will share it with families, staff, and the public. Often implementation takes much longer than originally thought because of changes ordered by CMS or others. At present, DHHS aims to begin implementation of the new waiver in January 2016.

Below are some of the changes in the renewal waiver:

  • Expands the resource allocation model statewide (currently Cardinal Innovations MCO uses this), which is a combination of the Supports Intensity Scale (SIS) and other measures to correlate needs/acuity to resources (services) to develop individual budgets. This change may result in more services for some and less for others. For more information, see Appendix C-4 in the draft (starting on page 119).
  • Phases in the individual budgets based on resource allocation over two years
  • Increases the flexibility of services
  • Replaces the current Personal Care and In Home Skill Building services with a new waiver service: Community Supports and Living. Those separate services will be blended into one to allow for more flexibility. At this time, ASNC is concerned about the removal of the in-home intensive skill building component and a lack of intensive skill building within the waiver. However, we understand that DHHS is also working on another service for autism treatment outside of the waiver through Medicaid that may alleviate some of these concerns as long as there is no gap in those critical services. We will share further information as it comes available on that proposed service.
  • Adds Supported Living as a new service that allows two adults to live in a non-licensed program and receive supports. This service allows for more flexibility and integration into the community.
  • Alters respite definition to allow for respite in an adult family living (AFL) setting

Other minor changes include:

  • Updates military transfer slots from out of state
  • Day Supports: moves to hourly units and no longer has service start and end in the licensed day facility to allow for more flexibility
  • Residential Supports: updates the levels 1, 2, 3, and 4 to be determined by the individual budgeting methodology. Allows new four-bed programs in the Appendix.
  • Respite: adds language around nursing level; allows respite to occur in AFL settings
  • Supported Employment: removes the requirement for staff to have three years of full-time experience to help with capacity
  • Community Guide: changes to Community Navigator with more specific and increased duties within the definition to help access supports and services as well as empower
  • Crisis Services: specifies the use of Consultative Services allowed as part of this service as well
  • Other changes and updates to service definitions, policy, and quality measures based on feedback and data review

Please take the time to review the document and submit comments to DHHS with needed changes from your perspective. ASNC will provide updates as it learns more throughout the year. If you have questions, please do not hesitate to contact Kerri Erb, Chief Program Officer, kerb@autismsociety-nc.org.

FAQs related to SB 676: Autism Health Insurance Coverage

Background: After six years of working to pass coverage of autism treatments under health insurance through both chambers of the North Carolina General Assembly, the Autism Society of North Carolina (ASNC) decided to take a new approach to the problem: ASNC came together with other North Carolina advocacy groups, professionals, clinicians, and insurers to work toward a set of agreed-upon recommendations to the General Assembly for providing coverage for Autism Spectrum Disorder. The goal was to have an achievable, measured approach that would provide for a broad range of treatment options while assuring an annual benefit amount. Families and children cannot wait another year.

What does SB 676 do?

  • SB 676 requires health plans to cover treatment of autism for children up to age 18.
  • Requires coverage of Adaptive Behavior Treatment, which includes Applied Behavioral Analysis (ABA) therapy and other evidence-based therapies such as TEACCH, Pivotal Response, etc.
  • Coverage for Adaptive Behavior Treatment is limited to $40,000 per year.

Who supports the bill?

A coalition of NC-based mental health professionals, families, physicians, advocates, and insurers, including

  • The Autism Society of North Carolina
  • The Arc of North Carolina
  • TEACCH Autism Program
  • Duke Center for Autism and Brain Development
  • North Carolina Council of Child and Adolescent Psychiatry
  • North Carolina Pediatric Society
  • North Carolina Psychiatric Association
  • North Carolina Psychological Association
  • Blue Cross and Blue Shield of North Carolina

Does this bill cover all health insurance plans?

This law covers the large group plans for companies in North Carolina that follow state law. As we have pointed out in our policy paper on insurance, state laws can only affect certain kinds of health insurance plans that comprise a small part of the health plan marketplace. Employers are more likely to offer coverage voluntarily, even when they are not required to do so, in states where coverage is required. ASNC continues to advocate for better coverage in all plans, but change happens one step at a time.

Why does the bill not require more coverage? What about adults? Or those who need more than $40,000 in adaptive behavioral treatments?

ASNC and other groups brought up all of these issues in our discussions about the legislation. Every bill in the General Assembly is a compromise. Policymaking is all about windows of opportunity: they are open for a short period of time and ASNC felt that is was important to work to pass some kind of benefit now, to make sure families and children would get a benefit while we had the support of the General Assembly. The insurance marketplace covered under this bill is the same as previous bills. The benefit cap is higher in this bill at $40,000 and also is required to rise with inflation. Unlike previous bills, this bill does not have a requirement that individuals be diagnosed by age 8 to get coverage.

Does SB 676 remove protections of mental health parity from children with autism?

Section 2(i) on page 3, lines 45-50, requires health benefit plans to provide coverage for autism in accordance with federal mental health parity.

Why is the definition of mental illness under mental health parity changed?

This definition only applies to insurance coverage and specifically to the coverage for Adaptive Behavior Treatment for autism. Without this change, insurers cannot add a behavioral benefit that has limits. There are many definitions throughout the general statutes that define mental illness and disability. This bill does not affect any of those definitions.

The State Employee Health Plan limits coverage of Applied Behavioral Analysis (ABA) therapy. Do they have to follow mental health parity laws for their ABA therapy benefit? Did they have to make changes to mental health parity?

The State Health Plan is not required to follow mental health parity laws for ABA therapy. Children and youth are getting ABA therapy as part of the State Health Plan in spite of parity laws not applying.

The bill mentions DSM-5. Does this bill require that children diagnosed under DSM-IV (4) be re-diagnosed using DSM-5 criteria to receive the autism benefit?

The bill does not require re-diagnosis under DSM-5 criteria. DSM-5 changes to the insurance statutes reflect an update in the law. DSM-5 is now in effect, so the DSM-IV (4) language should not remain in the law. The DSM-5 specifically states that “individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.” 

Does SB 676 cover Applied Behavior Analysis (ABA)?

YES. The definition of Adaptive Behavior Treatment includes Applied Behavior Analysis as well as other treatments for autism. By using the broad term and not naming only one treatment option, the bill allows for a range of behavioral and development interventions, including ABA, “that have been shown to be clinically effective.”

Does SB 676 allow ABA therapists (BCBAs) to provide ABA therapy in North Carolina and be reimbursed?

YES. ABA therapists (BCBAs) are already providing services in North Carolina and their services are being reimbursed. Even though they are not licensed, current law allows BCBAs to practice in NC as long as they are supervised. This bill does not change any ability to work. The House passed a behavior analyst licensure bill to license BCBAs to practice without supervision. That bill is currently in the Senate and is eligible to be passed this year or next year. Many organizations worked together to come up with the licensure bill, and although the Autism Society of North Carolina does not typically take a position on the licensing of professional groups, ASNC has endorsed the bill and will be working to pass it in the Senate.

Has there been opposition?

Unlike previous years, this bill is not opposed by insurers because we have worked with them to craft a compromise. SB 676 is the only insurance coverage bill that is not being opposed by the NC Chamber or other business associations that often oppose bills requiring new insurance coverage. 

What have neighboring states done on this issue?

While more than 40 states now have some requirements to cover autism in health plans, they differ greatly in the ages covered, the benefit limits, and the plans included.

  • Georgia requires insurers to provide up to $30,000 a year in coverage of ABA therapy for children 6 and under who have been diagnosed with autism.
  • Virginia requires large group plans in the fully funded market to cover up to $35,000 a year in coverage of ABA therapy for children 10 and under.
  • South Carolina requires large group plans in the fully funded market to cover ABA therapy up to $54,000 a year for children diagnosed before age 8, with coverage up to age 18.
  • Tennessee has not passed legislation.

Tips and Strategies to Address Challenging Behaviors

visualschedulesThis article was contributed by Nancy LaCross, ASNC Autism Resource Specialist in the Raleigh area.

As a parent of an adult child with autism, I understand firsthand how difficult it can be to support a loved one with significant behavioral challenges. I can remember reaching out to one professional after another looking for the magical solution to end the challenging behaviors immediately. Time and time again, I would leave a professional’s office feeling a bit deflated because there wasn’t a quick solution. Though my son had some wonderful skills in some areas, his severe behaviors seemed to impede his ability to access many resources in the community.

Though I don’t have a magical solution for ending challenging behaviors, I do have a parent’s perspective on tips and strategies that have helped my own child.

If your child has negative behaviors, I would first encourage you to identify the target behaviors. A few examples:

  • Physical aggression: hitting, biting, kicking, spitting, and head butting
  • Property destruction: breaking windows, throwing items, and breaking toys
  • Self-injurious behaviors: head banging, pulling out own hair, and biting self
  • Sound-making: humming, yelling, screaming, and making unusual sounds
  • Unusual body movements: tilting head in unusual positions, flapping arms, jumping, and flicking fingers
  • Non-compliance: not completing tasks, not following safety rules, not following rules at school, and refusing to do tasks

Once the target behaviors are clearly identified, figure out the function of the behaviors. What is the person communicating to you with these behaviors? Could it be that the person…

  • feels unsafe
  • doesn’t know what they should be doing
  • feels ill
  • is avoiding a task
  • prefers another activity
  • has sensory issues
  • wants attention

Once you identify the target behaviors and figure out the function of the behaviors, then you might want to investigate whether there are triggers for these behaviors. Are things being done that would increase the likelihood of a behavior to occur? Here are some examples of my own child’s triggers:

  • Not knowing who is in charge
  • Not knowing what to do
  • Hearing negative words such as no, don’t, can’t, and stop
  • Misunderstanding verbal directions or comments
  • Misunderstanding facts vs. opinions
  • Not understanding when to begin and/or end a task
  • Feeling unsafe with people, an environment, or a situation
  • Others aren’t following the rules
  • A change to the schedule
  • Expectations aren’t understood

Once we have identified triggers, then we might be able to avoid some behaviors by making modification and/or accommodations to what we as caregivers do. Below are some examples of how our family and professionals working with my son made modifications to our old way of doing things:

  • Not knowing who is in charge
    • An index card was created with the name of the person that was his go-to person at the time. For a younger child, they might also need a photo of the person.
  • Not knowing what to do
    • A visual schedule was created for him. When he was very young, the schedule was an If –Then schedule but as he got older, we could add more items.
    • My son really benefits from a task analysis: step-by-step directions on what he needs to do during an activity, which is listed on his schedule.
  • Hearing negative words like no, don’t, can’t, and stop
    • We try very hard to avoid using negative words. We had to train ourselves to tell our son what to do, instead of what not to do. For example, if our son was hitting a toy, we would redirect by saying, “hands by your side.” If we said “stop hitting your toy,” it would escalate the behaviors.
  • Misunderstanding verbal directions or comments
    • Keep it simple. Limit words.
    • If possible, use pictures or written words to communicate
    • Now that my son is older, we find texting to be an excellent way to communicate with him.
  • Misunderstanding facts vs. opinions
    • We work on these concepts on a daily basis. He doesn’t understand that other people may have a different perspective or opinion than his own.
  • Not understanding when to begin and/or end a task
    • A schedule and a task analysis are effective tools for creating a clear beginning and end.
    • When he was younger, we used a visual timer.
    • When he was younger we also would tell him how many more times he could do an activity. For example, if he was using the slide at the local playground we would say, “five more slides, then in the car” (holding up 5 fingers), and we would count each turn.
  • He feels unsafe
    • Provide him with the name and contact information for a trusted person to communicate with if he feels unsafe and needs reassurance.
    • Share a list of rules and regulations with him about the setting that he is going to be in.
    • Prepare him for a new environment or situation by reading him a social story in advance.
  • He feels that others are making fun of him
    • We have used role playing and social stories to work on this concept.
    • We also used Jed Baker’s social story picture books.
  • Others aren’t following the rules
    • We used social stories to try to teach him more about this.
  • A change to the schedule
    • Advance notice can be helpful
    • Using a social story to prepare for a change
    • When my son was in middle school, we used to have one activity for the day be “change in activity” or “mystery activity” just to get him used to having something unexpected happen each day.
  • Expectations aren’t understood
    • Again using a schedule and task analyses make expectations much easier to understand.
    • We also had to be sure tasks were within his skill set.

Teaching your child new skills

  • Self-regulation: When my son was very young, he had poor body awareness and often seemed to go from 1 (calm) to 5 (full meltdown) quickly. He might be calmly playing with a peer and then suddenly pushing them to the ground. We found that working with an occupational therapist experienced with sensory integration was helpful. When my son got revved up, we had to find ways to help him calm down. Under the supervision of a private occupational therapist, we used oral motor sensory objects (examples: chewy candies, gum, and chewy tubes), weight-bearing activities (pressing on the wall, weighted blankets, weighted vests, and heavy work), and exercise (jumping on a trampoline, swinging, running in place, jumping to the sky and touching the ground, and rolling on the floor) to work on self-regulation.
  • Replacement behaviors: Sometimes if we understand the function of a behavior, then we can assist the individual in replacing the behavior with something more desirable. For example, my son might tear up a homework sheet or break his pencil while working on his schoolwork. What my son was trying to communicate was that he was frustrated with his homework. Though he was verbal, when he was overwhelmed, his verbal skills disappeared. At that moment, he didn’t have the ability to use his words to ask for help. We learned that if we first provided him with a visual card to ask for help and provided him with homework expectations (“You need to do two problems,” or “You need to work for 10 minutes and the timer is set”) then he was much less likely to rip up his homework sheet and break the pencil.

If you need more support in managing behaviors, here are some people or resources you might consider:

  • Teachers
  • Special education staff at your child’s school or at the central office
  • Pediatrician or primary care doctor for a referral
  • Psychologist
  • Psychiatrist
  • Applied Behavior Analyst: Find a board certified behavior therapist at www.bacb.com.
  • Contact your MCO: My son has benefitted from a service called Specialized Consultative Services. If you need to know more about services and how to obtain them, please read the ASNC Accessing Services Toolkit
  • ASNC Clinical Team
  • Call your local Autism Resource Specialist for options
  • ASNC Bookstore, at www.autismbookstore.com, offers a few of my favorite books for teaching social skills to my son and working on behavioral issues:
    • The Incredible 5-Point Scale assisted my son in identifying behaviors/emotions/anxiety and then having a concrete system in place to know how to manage it. The scale can then transition with my son throughout his day.
    • A 5 is Against the Law! This has been an excellent concrete visual system for my son. We have been using this book to assist our son in understanding how his behaviors are perceived by others, how social expectations change as he ages, and how some behaviors are okay in one settings, like home, but not okay in others, like school or a job.
    • The Ziggurat Model is a good resource for those interested in learning more about behavior plans.
    • The Hidden Curriculum helped me as a parent to identify the areas that my child may find challenging.
    • Social Skills Picture Books: All of Dr. Jed Baker’s social skills picture books were excellent tools for me to read and review with my son. The pictures provided my son with concrete examples of social situations he would encounter in a school setting

Nancy LaCross can be contacted at nlacross@autismsociety-nc.org or 919-865-5093.

ABLE Authorization Close to Passing in NC; US Seeks Feedback

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

The federal government released draft guidelines for ABLE accounts and will be taking comments on the new regulations for the next 90 days. Advocates are concerned that requirements for certifying that spending for allowed expenses with ABLE account funds under the new regulations will be difficult for families and individuals with disabilities to navigate. We encourage people to review the draft guidelines and submit their comments to the IRS at this link.

If you would to contribute comments on the draft guidelines through the Autism Society of North Carolina, please send them to Jennifer Mahan, Director of Advocacy and Public Policy, at jmahan@autismsociety-nc.org. ASNC will make comments on the draft regulations along with several of our advocacy partners.

Progress in NC

Twenty-two states have passed authorizing legislation for ABLE accounts, and North Carolina’s ABLE Act authorizing legislation is moving forward! Both the NC House and Senate included funding to administer and promote the use of ABLE accounts in the budget. The House passed its ABLE bill unanimously, and the bill now moves on to the Senate, where it has much support. Please thank your House and Senate members for their efforts to pass this legislation in North Carolina.

ASNC will continue to advocate for the ABLE Act in NC, and we are looking forward to sharing information with you about the new program once the legislation passes.

Background: The federal ABLE Act, Achieving a Better Life Experience, allows states to set up savings programs that are similar to 529 college savings but specifically for people with significant disabilities. ABLE savings plans would allow people with disabilities, their families, or friends to save money for future needs such as support, housing, services, health care, and personal care, without jeopardizing eligibility for other needed benefit programs. People of any age who acquired their disability before the age of 26 are potentially eligible. SSI and SSDI recipients would be eligible automatically; other people who have significant disabilities will have to meet a disability standard of proof established by Treasury regulations that will be written this year. For more information about ABLE accounts, please see our previous blog post.

Have questions about this legislation or other public policy issues? Contact Jennifer Mahan, ASNC Director of Advocacy and Public Policy, at jmahan@autismsociety-nc.org or 919-865-5068.

Let’s Talk About Abilities

Logan in living roomThis article was contributed by Juliette Heim, an ASNC Autism Resource Specialist in Asheville and mom to a son with autism.

Autism comes with many challenges that we face every single day. We have to address these challenges and learn how to manage them, and we often have to “think outside the box” in our approaches. There is no “day off,” and it often can absorb and drain us.

It’s so much about autism – and the challenges and deficits that accompany it – that sometimes we miss out on the strengths and the abilities that our kids do have.

People with autism have abilities, and we need to look closely and see what their strengths are. Our kids may not necessarily verbalize that they are very good at something in particular. In some cases, they may not have been given an opportunity to demonstrate some of the skills and strengths that they have, simply because we may not know what they are.

As parents, we need to look closely at our children, try to figure out what their strengths may be, and then build on those skills. We should incorporate those strengths and skills into their learning environment, which will also help build their self-esteem.

My son Logan, who has autism, certainly has some very interesting strengths, which he demonstrated to us in his own way.

When Logan was only 4 years old, we realized that he was extremely fascinated with clocks. Every time he looked at an analog clock, he’d always find a digital clock and compare the two. We soon figured out that he was learning to tell time one minute at a time. Here we see a great strength, in that our 4-year-old son could tell time and had developed the concept of time, and he learned it in his own unique way. His typically developing twin sister learned to tell time several years later, along with her peers.

We took advantage of this skill and incorporated a clock schedule for Logan. He loved seeing a clock in front of each activity on his schedule, and he followed it beautifully, thanks to all those clocks.

Logan watching Julie on TVA couple of years later, we noticed that our nonverbal son had a fascination with weather. He always wanted to watch The Weather Channel, and when our local news station displayed the weather, Logan was always right there, watching very closely and trying to mimic what the meteorologist was saying. This child was nonverbal but trying to say sentences. He only talked when it was about the weather, despite how hard we worked to encourage him to talk.

Logan meets JulieWhen he was 13, we arranged to take him on a tour of our local news station, WLOS, with his speech pathologist. We were ecstatic about the visit, as it turned into a news story, and Logan very willingly stood in the studio with a microphone attached to his hip and remote in hand, lights and big cameras surrounding him. He was “in the spotlight”! Logan became the weatherman. He was given some visual prompts as needed and was able to demonstrate his ability to talk, given the fact that this was a subject of “high interest” for Logan. To see the news report on Logan, Finding a Voice, go to www.youtube.com/watch?v=Jk0co2JnTdg.

Logan on screenWe use Logan’s interest in weather to help him learn. Every evening just before Logan goes to bed, our family meets in our living room to play a silly “bunny toss” game. I think only one who understands autism will be able to relate or understand this game, but it has merit. One of us tosses the bunny to another family member, and we say a weather-related word or short sentence as we toss the bunny. The person who catches the bunny then comes up with their weather word or sentence and tosses it along to the next person. We are now expanding this into state capitals and other state-related questions. Logan will Google on his iPhone to search for answers.

As a parent, it is very rewarding to study my child’s abilities. It is equally rewarding to see the impact it makes on his self-esteem when he can show us what he CAN do.

Juliette Heim can be reached at jheim@autismsociety-nc.org.

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