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.

Managing Frustration and Anxiety

 

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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.

 

2016 Legislative Wrap-Up: Education Budget and Bills

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This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy at ASNC. It is the second of three parts wrapping up the NC General Assembly’s 2016 short session.

Teacher and school staff raises, education programs and supplies: The budget adjustments bill adds $240 million for teacher and school staff raises, plus an additional $10 million in merit-based incentives. This represents an average 4.7% increase in school staff salaries. Additional funds were added for school supplies ($2.5 million R), digital learning programs ($4 million R, 0.7 million NR) and textbooks and digital materials ($10 million NR). Cuts were made to central office administration at the LEA level ($2.5 million R), the NC Department of Public Instruction ($250,000 R), and grants to 17 afterschool providers from the at-risk supplemental funds ($4.7 million).

K-12 Disability Scholarships: Adds $5.8 million (R) to address the waiting list in the scholarship program for kindergarten through high school students with disabilities attending non-public schools. The program provides scholarship grants of up to $4,000 per semester for eligible students. The revised net appropriation for Special Education Scholarships is $10 million. For more information on who qualifies and how to apply for the program go to the website of the NC State Education Authority. A special provision (technical correction bill) in the budget expands the type of students who qualify for the scholarships. A reminder that only students from K-12 with disabilities who leave the public school system or enter the non-public school system in kindergarten or first grade qualify for the scholarships. The new requirements in the budget now categorize eligible groups based on a priority system which also expands eligibility:

1st priority: Eligible students who received a scholarship in the previous semester

2nd Priority: Students who were enrolled in a public school during the previous semester, OR  who received special education or related services though the public schools as a preschool child with a disability the previous semester, OR a child identified as a child with a disability in the public school system before the end of initial enrollment in kindergarten or first grade, OR (new) a child whose parent or legal guardian in on full-time duty status in the armed forces.

3rd/last priority: (new) a child who has been living in the state for at least 6 months.

These changes allow children with disabilities who are in military families (those currently here and those who moved to the state recently) as well as children with disabilities who left the public school system in previous years to attend non-public schools the opportunity to apply for scholarships. Because qualification for the program is complicated, we encourage families who think they may qualify to contact the NC State Education Authority directly. Please note that if applications for scholarships exceed the funds available for the program, children will be put on a waiting list until funding is available.

Student assault on teacher/felony offense, S343: Advocates including ASNC were closely monitoring this bill that would have made any “assault” (not defined in law) on a teacher or school staff a felony offense. There are a number of objections to the law: NC treats 16- and 17-year-olds as adults and charges, tries, and penalizes them in an adult system; assaults that result in injury already are classified as a felony; and for individuals with behavior disorders, such as autism, their disability may be at the core of the behavior problem. Making it a felony would not change behavior or address the issue of managing behavior in school. Disability advocates were able to get children with an IEP exempted in the bill, but many children with disabilities are not identified by schools. The NC Senate passed the bill, but the NC House still had it under review by committees at the end of session, and it did not pass.

Math curriculum changes, H657: This bill, which came very close to passing in the final weeks of the session, would have required changing North Carolina’s public school math curriculum, despite evidence that changes made in the past four years to the math curriculum are improving students’ math testing and college readiness. ASNC and other advocates were concerned that a new curriculum adapted for students in Occupational Course of Study or for those with learning challenges would not be ready in time given the short deadlines for implementation, that changes might require a return to older standards for passing college-ready math courses for OCS students, and that students enrolled in virtual schools would not have access to math courses. Advocates asked that students with disabilities be exempted from the curriculum changes. Conference committees appointed to sort out differences in the House and Senate versions of the bill were not able to meet, and the bill did not pass.

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

Make 2016-17 Your Child’s Best School Year Yet

Elementary school children writing in class

It’s almost here again – back-to-school time! Are you ready? Or does the mere thought of a new school year make you anxious? The Autism Society of North Carolina wants to partner with you and your child for a successful school year.

Please take advantage of the resources we offer.

IEP-Toolkit-webToolkits: We have many easy-to-use, accessible toolkits to guide you through challenging times. Several are on school-related topics: The IEP, Behavior & the IEP, and Bullying. All of these free toolkits can be read online or downloaded and printed: http://bit.ly/ASNCtoolkits

Autism Resource Specialists: We have 17 Autism Resource Specialists across the state, standing by to consult with you. They are all parents of children or adults with autism themselves, so they have firsthand knowledge and a unique understanding of what you’re going through. They strive to empower families to be the best advocates for their children. Find the Autism Resource Specialist serving your area: http://bit.ly/AutismResourceSpecialists

Podcasts: Several of our Autism Resource Specialists got together for a back-to-school discussion. Listen in with our podcast titled “Back to School: What You Need to Know and Do for a Successful Start!” You can check out the complete list of available podcasts here: http://www.autismsociety-nc.org/podcasts

Workshops: Our Autism Resource Specialists also share their expertise through workshops, both in-person and online. Some upcoming webinars are IEP Basics: Frequently Asked Questions, IEP Notebook: Taming the Paper Monster, and Preparing for College Starts at Home. We also have many workshops in various locations; find the complete schedule here: http://bit.ly/ASNCWorkshopCalendar

backtoschool Coupon_0816_web2ASNC Bookstore: If you are looking for books and videos, our bookstore is the place to go. The ASNC Bookstore is the most convenient place to find the very best autism resources, with over 600 titles. Bookstore staff members are always willing to share recommendations on particular topics. And until Aug. 31, we have a 20% off sale with code BTSS2016! Browse online: www.autismbookstore.com

Chapters & Support Groups: ASNC has more than 50 Chapters and Support Groups around the state. Chapters provide a place where you can receive encouragement from families facing similar challenges and share experiences, information, and resources. Find one near you: http://bit.ly/ASNCChapters

Our blog: Of course, you already know about our blog because you are reading it right now. But have you subscribed? You don’t want to miss the educational posts from our Autism Resource Specialists or Clinical staff. One recent education-related post was College Options for Students with ASD. Use the search box at the top right to look for posts on particular topics.

Stay connected: Last but not least, connect with us! Sign up to receive our monthly email newsletters and the twice-yearly Spectrum magazine at http://bit.ly/ASNCStayInformed. Follow us on Twitter and Facebook. We are constantly sharing helpful information, and we don’t want you to miss any of it.

Still have questions? Please contact us so that we can help you find the help you need:

800-442-2762 (NC only)
919-743-0204
Autism Society of North Carolina
505 Oberlin Road, Suite 230
Raleigh, NC 27605
info@autismsociety-nc.org

 

2016 Legislative Wrap-Up: The Budget

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This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy at ASNC. It is the first of three parts wrapping up the NC General Assembly’s 2016 short session.

The NC House and Senate agreed on a budget adjustments bill for the second year of the state’s two-year budget, which allocates a total of $22.34 billion across state services including education and health and human services. The 2016 budget adjustments spend less than 3% over what the 2015-2016 budget provided and only adjust the second year of the biennial budget. The budget includes funds for the state’s rainy day account, teacher and state employee raises, additional K-12 students with disabilities scholarships, and 250 additional Innovations home and community waiver slots, while reducing the base budget for Medicaid to reflect lower projected costs for healthcare services. Changes to tax revenue were addressed in a separate bill, which broadens the sales tax base and lowers individual income taxes by increasing the standard deduction from $1,000 to $2,000 through next year.

The $152 million planned cut to single-stream funding for mental health, developmental disabilities, and substance abuse services (MH/DD/SA) remains in the budget. Last year, $120 million was removed with a provision to restore $30 million if targets were met by the end of the 2015-16 fiscal year in June. Those targets were met, and the $30 million restored. The same budget provision remains in place for this year: if targets are met, $30 million will be restored at the end of 2016-17. However, the overall cut remains at an additional $152 million from LME/MCO reserves, typically used for services to people without other health-care options.

There are a few special provisions that target issues for the intellectual and/or developmental disability (I/DD) community including a comprehensive look at federal and state changes to the I/DD system, a strategic plan to address behavioral health in NC that looks at gaps in the LME/MCO system, and a study on the rates paid for certain types of services. As we look toward the 2017 budget process, single-stream dollars will have a significant deficit that could affect direct services across the state. Overall, the health and human services budget attempts to address key priorities from the General Assembly and the governor with small expansions to crisis funding, waivers, and disability scholarships and the preservation of existing autism services in Medicaid and through the nonprofit funding sections, but no large-scale expansion of services or special education funding.

The full budget bill with special provisions and conference reports listing specific dollar amount changes can be viewed at www.ncleg.net; links to budget documents are in the left column. The overall budget includes technical corrections made in House Bill 805 that may not be included in the ratified version of the budget until after it is signed into law. In the sections below where “recurring funds” are mentioned with an R, this means that the program will be funded in an ongoing way (at least for the next year and hopefully into future years) and “non-recurring” noted with an NR indicates that funds are one-time and only for the 2016-17 fiscal year.

 

Health and Human Services Budget

Innovations waiver slots: The final budget includes $2.6 million (R) for 250 Innovations home and community-based waiver slots (formerly CAP-IDD) to begin opening January 1 2017, which were included in the governor’s budget proposal. Innovations 1915 (c) waivers provide services to people who qualify for institutional level care because of intellectual or developmental disabilities, but can be served under a community-based program in their homes.

Replacement of LME/MCO single-stream funds: $30 million will be restored to single-stream funding which is used for MH/DD/SA services and individuals that are not eligible for Medicaid. An additional $30 million will be made available if there is a surplus in the Medicaid budget. This is well short of the $120 million and $152 million removed in budgets last year and this year.

Governor’s Task Force recommendations: The budget reserves $10 million (R) and $10 million (NR), to implement the recommendations of the Governor’s Task Force on Mental Health and Substance Use. The funds shall be held in the Mental Health and Substance Use Task Force Reserve Fund, will not revert, and shall remain available until expended. The task force recommendations include increasing access to child crisis services.

Dix property and crisis beds: The budget includes provisions for the sale of the Dorothea Dix Hospital property: $18 million and $2 million in funds will go toward increasing access to behavioral health care hospital beds and crisis centers for children and adolescents.

Medicaid rebase: This removes $350 million (R), 7.8%, from the Medicaid budget based on lower than projected costs for health care and the number of people eligible for Medicaid. These funds were moved into the general fund to support other budget increases.

 

Special provisions of note

The state budget includes policy provisions directing how funds are to be used and often include requirements to look at how departments or programs are operating, including the fiscal impact of making changes to them. A number of provisions could have effects on intellectual and/or developmental disability services.

IDD Study/Study Innovations Waiver: In the budget, the General Assembly’s Joint Legislative Oversight Committee on Medicaid and NC Health Choice is directed to study issues related to the delivery of services for people with I/DD, including causes and solutions for the growing wait list for Innovations home and community-based waiver slots. Potential solutions to address the wait list that are mentioned in the study are funding increases, creating “supports” waiver slots, and utilizing 1915(i) waiver options. The study is also expected to take a look at issues surrounding single-stream funding (state funds for non-Medicaid services), the impact of federal mandates on supports and services, and the coverage of services for autism including any state plan amendments needed to address guidance from the Centers for Medicare and Medicaid Services that directs states to offer autism behavioral services such as Applied Behavior Analysis (ABA) or other treatments.

Rate study for residential services: This would study the “adequacy” of rates paid to providers for residential services, including supportive services such as respite, room and board, Special Assistance, transportation, and state-funded supports.

LME/MCO gap analysis and strategic plan: Section 12F.10.(B) of the budget special provisions requires the NC Department of Health and Human Services to develop a strategic statewide plan to “improve the efficiency and effectiveness of state funded behavioral health services,” including IDD services. Included in this plan are a determination of the state agency responsible for state-funded behavioral health, defining current and future roles of the LME/MCOs; a process for including measurable outcomes in contracts with providers and managed care organizations; a statewide needs assessment for MH, IDD, SUD, and TBI, looking at a continuum of care across services and counties; “solvency standards” for fiscal management of LME/MCOs; and anything else needed for the report. The plan and report to the General Assembly is due January 1, 2018.

Study of Medicaid coverage for school-based health: The General Assembly has asked NC DHHS to identify all school-based health services that are eligible for federal matching funds through Medicaid and report on the fiscal impact of adding Medicaid coverage for these school-based services not currently offered in NC.

Report on the progress of ABLE program trust: The Department of the State Treasurer is required to report to the General Assembly by December 1 on the status of the Achieving a Better Life Experience (ABLE) Trust program that would allow people with disabilities and their families to open 529 savings plans.

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

College Options for Students with ASD

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This article was contributed by Nancy Nestor, an Autism Resource Specialist in the Charlotte region, an autism mom, and a former teacher.

This is the time of year when many high school students and their families are thinking about the next steps in their lives – touring colleges, taking the SAT or ACT, and starting college applications. It can be anxiety-inducing as well as exciting. For students with Autism Spectrum Disorder (ASD), there may be some special considerations. We will go over these, as well as potential supports and resources.

 

Is your child ready to live independently?

If you are contemplating sending your teen off to college, the Guardianship Capacity Questionnaire is useful to assess readiness for the independence that adulthood brings. The form, which you can find at www.nccourts.org/forms/Documents/846.pdf, asks questions about the person’s ability to independently use language and communicate, take care of their nutritional needs, maintain good hygiene and health, stay safe, live by themselves or in a group, seek and maintain employment, handle finances, and self-advocate. Completing the form will help you know what to work on this year with your teen.

 

College in a traditional program

Once someone graduates from high school with a diploma or an Occupational Course of Study Diploma, they can continue on to college, if that is a reasonable choice for them and they have the grades to support college admission. College students with ASD can still receive academic supports if they meet the following conditions:

  1. They have a current medical diagnosis of autism.
  2. They contact the Office of Student Disability at their college or university to share that they have a disability.

Education in the public school system must be free and appropriate. According to the US Department of Education, Office for Civil Rights, colleges and universities are not required to provide FAPE, free and appropriate public education; however, they must provide appropriate academic adjustments to avoid discrimination against a student on the basis of their disability. Also, if a college or university provides housing to nondisabled students, the same or comparable housing must be accessible to those with disabilities at a location that is convenient and with the same cost.

Although the education is no longer free, a college or university cannot charge extra for providing academic adjustments or for participation in its programs or activities. Once the office of student disability has been notified and given the appropriate information, staff members can work with the student to determine the necessary academic adjustments. Just as with an IEP, the adjustments will be individualized to the student’s needs. In the college setting, academic adjustments include: “auxiliary aids and services, as well as modifications to academic requirements as necessary to ensure equal educational opportunity. Examples of adjustments are: arranging for priority registration; reducing a course load; substituting one course for another, providing note takers, recording devices, sign language interpreters, extended time for testing, and, if telephones are provided in dorm rooms, a TTY in your dorm room; and equipping school computers with screen-reading, voice recognition, or other adaptive software or hardware.”

Also, the Office for Civil Rights states that “In providing an academic adjustment, your postsecondary school is not required to lower or substantially modify essential requirements. For example, although your school may be required to provide extended testing time, it is not required to change the substantive content of the test. In addition, your postsecondary school does not have to make adjustments that would fundamentally alter the nature of a service, program, or activity, or that would result in an undue financial or administrative burden. Finally, your postsecondary school does not have to provide personal attendants, individually prescribed devices, readers for personal use or study, or other devices or services of a personal nature, such as tutoring and typing.”

To learn more about students’ rights, go to http://www2.ed.gov/about/offices/list/ocr/transition.html.

 

College Through a Comprehensive Transition Program

Students who are graduating with a Certificate of Attendance or an Occupational Course of Study Diploma may be appropriate candidates for one of the Comprehensive Transition Programs. The “Think College” website, www.thinkcollege.net, lists  a variety of two -and four-year programs that are housed in universities, colleges, community colleges, and technical schools across the state.

They offer a variety choices for students, including on-campus, fully inclusive housing with the ability to take regular classes as an audit, partial inclusion in various settings, or living/working within a self-contained group. In some of the programs, the students will receive a certificate for course completion, but a few allow students to work toward a degree.

Because of the success of Comprehensive Transition Programs, many community colleges are strengthening their compensatory education programs to include supports for students on the autism spectrum. Compensatory education classes are inexpensive and sometimes free. If moving away from home is not yet an option, it would be wise to research community college options near your home to see whether they could provide reasonable supports. Many students enroll at the community college level to gain skills they will need for higher level classes and also to get basic requirements out of the way for their major at a university level.

 

Applying for Scholarships and Grants

Although there are no autism-specific scholarships available for North Carolina residents at this time, students with autism are free to compete for scholarships. Be sure to check several sources, such as your school guidance counselor, local organizations, parents’ employers, and the state. Many colleges and universities also offer scholarships.

Given the academic struggles that often accompany autism, many students do not have the grade-point average or the community involvement to be considered for scholarships. In cases like this, they can apply for federal and state grants. Before students can apply for these funds, they must fill out a FAFSA, or Free Application for Federal Student Aid at https://fafsa.ed.gov/.

To learn more about financial aid, go to www.collegescholarships.org/grants/disabilities.htm. When looking into a Comprehensive Transition Program, be especially careful because some programs do accept Pell Grants, but not federal student loans.

If a young adult has Innovations waiver funds, at least one NC program can use the funds toward education. Beyond Academics, a CTP Program at UNCG, is a state-accredited service provider and can work with any Managed Care Organization (MCO) in the state. Although Innovations funds cannot be used for class tuition and books, they can be used for supplemental support as required in their Individual Support Plan, which has been approved by their MCO.

 

Learn more

Upcoming workshops

  • Preparing for College Starts at Home: Webinar online on Tuesday, Sept. 13. Register now
  • Considering College? Prepare, Plan, Succeed!: Workshop in Raleigh on Tuesday, Sept. 27. Register now

Contact an Autism Resource Specialist near you.

Find books on autism and college, employment, and transitions in the ASNC Bookstore. Two we especially like are Life After High School and Smile & Succeed for Teens.

 

Nancy Nestor can be reached at nnestor@autismsociety-nc.org or 704-894-9678.