A New Year, A New Approach to Challenging Behaviors

Editor’s Note – The following post was written by Louise Buchholz Southern, M.Ed., BCBA, Training Specialist for the Autism Society of North Carolina (ASNC).

As professionals working in the field of Autism Spectrum Disorder (ASD) intervention and as parents of individuals with ASD, it’s likely that we have all experienced challenging and persistent behaviors. These behaviors come in many forms including aggression, property destruction, non-compliance, and self-injurious behavior, to name a few. When we experience these behaviors in an individual with ASD, one of the first questions we should ask ourselves is, “What is the individual trying to communicate with this behavior?” What want, need, confusion, or fear is the individual trying to express? As one individual with ASD stated, “You can’t not communicate. Everything you say and do or don’t say and don’t do sends a message to others.”

Some behaviors take us by surprise, and seem to appear without any cause. However, if we operate under the assumption that there is always a reason for the behavior, we are more likely to take the action necessary to change behavior. Changing someone else’s behavior always requires a change in our own behavior first. So as the New Year begins and as we continue to face challenging behaviors, let’s assume that behavior is always meaningful and let’s ask ourselves these questions:

• Does the individual have a way to communicate his/her wants, needs, and choices all of the time and across contexts? In order to teach an individual the power of communication, we cannot compartmentalize their communication to certain parts of the day or to certain locations (e.g. only when the instructor directs the individual to a choice board that is affixed to the wall).
• Even if the individual is “verbal,” does s/he functionally communicate? For example, some individuals script from TV shows, or they repeat back what they hear rather than responding. Some individuals are nonresponsive to anyone other than people with whom they are very familiar. Some individuals use language that does not seem to make sense given the context. Some individuals label everything, but don’t use language to express wants or needs, or to respond to questions and statements. In all of these examples, while the individual is “verbal,” we need to explicitly teach and reinforce functional communication.
• Note: ASNC’s Training Department is preparing to launch a functional communication training workshop this spring. In addition, the Autism Internet Modules website http://www.autisminternetmodules.org offers a range of free trainings on evidence-based practices such as functional communication training and the Picture Exchange Communication System (PECS).
• Have we identified a behavior that we can teach and reinforce to replace the behavior that we don’t want to see?
• Are we effectively reinforcing those behaviors that we want to see? Are we applying consequences that are actually reinforcing /motivating to the individual? Are we reinforcing the appropriate behavior consistently, and are we making sure that the individual understands the connection between behavior and consequence (reinforcer)? Are we attending to (and reinforcing) those behaviors that we want to increase significantly MORE than we are attending to those behaviors that we want to reduce? Are we missing opportunities to reinforce the individual when s/he is doing what is expected?
• Are we delivering instructions/information in a way that the individual with ASD can understand?
• Are we visually structuring academic, leisure, and work activities so that the individual understands what to do, how much to do, when finished, and what next? Many individuals with ASD experience significant anxiety and frustration when they don’t understand the expectations, the “rules” of the game, or when the activity will be finished.
• Has there been a change to the routine or has something unexpected occurred? How can we better prepare the individual for these inevitable events?
• Does the individual have a strategy in place to regulate his/ her sensory needs? What self-calming activities do we need to explicitly teach? How does the individual indicate that he needs a break?

For more information about support services available to individuals, families and professionals through the ASNC Training Department contact Louise via email at lsouthern@autismsociety-nc.org.

For titles related to challenging behavior please visit the Autism Society of North Carolina Bookstore located at www.autismbookstore.com.

Action Needed: Personal Care Medicaid Changes Threaten Group Home Residents

Recent news reports have shed light on changes that will have a negative effect on individuals with Autism Spectrum Disorder and other disabilities who receive assistance through Medicaid’s Personal Care Services (PCS).

Please note that the Personal Care Services described in this blog are not the same personal care services delivered to individuals who are in the Community Alternatives Program for Intellectual and Developmental Disabilities (CAP-IDD) or those in the Innovations waiver program. – Editor

By Jennifer Mahan, ASNC Director of Advocacy and Public Policy

North Carolina recently changed the Medicaid eligibility criteria for people with disabilities to qualify for Personal Care Services, which is one-on-one care assisting people with things like eating, dressing, bathing and other daily living activities. These changes were prompted by a Medicaid rule that PCS delivered to someone living in their family’s home or an adult care homes have the same eligibility requirements.

Several options for eligibility criteria to use were presented for consideration during the 2012 legislative session. The one passed in the most recent state budget raised the eligibility criteria for PCS across the board which “saved” Medicaid several million dollars, but also resulted in making thousands ineligible for PCS. Here’s why:

• Residents of some group homes (often referred to as the 5600 or DDA group homes) for people with developmental disabilities and mental illness need Personal Care Services. Without the Medicaid funding for those services, group homes can no longer afford to provide care to their residents and support their operation. Simply put they have lost part of the revenue needed to keep the doors open.
• This month along with the loss of services, people began getting notices they must move. These people with disabilities, living on social security disability payments and unable to provide for much of their own care, now have nowhere to go.

You can read several new articles explaining how this crisis developed here:

• North Carolina Health News Coverage
• Charlotte Observer Coverage
• WRAL TV Coverage

On November 30th, the Speaker of the North Carolina House, Representative Tills, sent a letter to the Governor requesting that she call a special session of the Legislature to deal with group home funding and in the letter he promised that no other bills would be brought up for vote. The Autism Society of North Carolina thanks Speaker Tills for recognizing the critical nature of this situation in which thousands of people with developmental disabilities and mental illness may become homeless.

Now, the Governor must agree to the special session and Legislators must agree on how to fix the crisis. The Autism Society of North Carolina is working with the Arc of North Carolina and other advocacy groups to urge elected officials to call a special session of the NC General Assembly before December 31, which is when PCS services for many will end and threaten the loss of housing for thousands.

As of the posting of this Blog (Sunday, December 9) there has been no action on a special session. ASNC is asking individuals interested in this issue to become involved in the discussion. Here’s what you can do:

1. Sign the online petition to urge The Governor and Legislature to solve the Personal care crisis now!

2. If you prefer to contact elected officials directly, information is below. As always, please personalize your message by using your own words.

To contact Governor Perdue you can email her via the Office of the Governor email: governor.office@nc.gov

The message to the Governor is simple:
Please call a special session of the General Assembly and/or worth with Legislative Leadership to find a solution to the Personal Care Crisis for group homes and people with developmental disabilities.

To contact the Senate Leadership you can email Senator Phil Berger, President Pro Tem of the NC Senate at Phil.Berger@ncleg.net.

The message:
Please work with other Legislative leaders and the office of the Governor to find a solution to the Personal Care Crisis for group homes and people with developmental disabilities.

To contact the Speaker of the House Representative Thom Tillis, use email address Thom.Tillis@ncleg.net

The message:
Thank you for asking for a special legislative session and your commitment to finding a solution to the Personal Care Crisis for group homes and people with developmental disabilities.

We also encourage you to contact your own NC General Assembly Senator or House Representative and let them know of your concerns. To find your elected officials click here.

If you have any questions about these or other public policy issues please contact Jennifer Mahan, Director of Advocacy and Public Policy at jmahan@autismsociety-nc.org or 919-743-0204,  extension 1116.

Corporal Punishment in NC Schools – Progress Report

The following article was written by Linda Griffin, Parent Advocate Director for the Autism Society of North Carolina.

In July 2011 we posted a blog article about the shocking use of corporal punishment in NC public schools. At that time we reported that 38 NC school districts allowed corporal punishment and 16 of those schools had actually used corporal punishment during the 2009-10 school year. This October 2012 update brings good news.

In the 2011-2012 school year, out of North Carolina’s 115 school districts only 17 continue to allow the use of corporal punishment as a form of discipline. Although we are still not completely out of the Dark Ages, we have made enormous progress – especially when you stop to consider that a mere four years ago, about 70 NC school districts used corporal punishment annually! This move into the light is the result of a long-term team effort. Furthermore, 8 of the 17 districts did not use corporal punishment nor have they used it in recent years. The 8 districts that allow but have not used corporal punishment in recent years are:

• Alleghany
• Alexander
• Ashe
• Northampton
• Person
• Randolph
• Stanly
• Thomasville

Unfortunately, 9 of the 17 districts used corporal punishment a total of 366 times! Those districts are listed below along with the number of occurrences:

• Bladen (1)
• Caswell (1)
• Graham (43)
• Macon (5)
• Madison (2)
• McDowell (29)
• Onslow (4)
• Robeson (267)
• Swain (14)

We are grateful for the data which was compiled through an Action for Children North Carolina survey and through the NC Department of Public Instruction. Currently, all we have is the total occurrences figure. Data by race, age, gender and disability status will not be available until DPI releases that information in February 2013.

If you have questions or concerns about school issues, contact the Autism Society of North Carolina Parent Advocate in your area.

I should remind families that NC has a law regarding corporal punishment that requires the involvement of a parent or guardian before school officials may administer corporal punishment on a student. Here’s what the law says:

“Corporal punishment shall not be administered on a student whose parent or guardian has stated in writing that corporal punishment shall not be administered to that student. Parents and guardians shall be given a form to make such an election at the beginning of the school year or when the student first enters the school during the year. The form shall advise the parent or guardian that the student may be subject to suspension, among other possible punishments for offenses that would otherwise not require suspension if corporal punishment were available. If the parent or guardian does not return the form, corporal punishment may be administered on the student. This act is effective when it becomes law and applies beginning with the 2011-2012 school year.”

This means that schools are required to give parents the option to opt-out of corporal punishment. Schools should have sent a letter and a form at the beginning of the school year to parents in the 17 counties where they still allow its use. Parents need to fill out and return the form to the school in order to opt-out of corporal punishment.

It is important to remember:

• Schools need to have current addresses for parents – if they have moved, the parents need to make sure the school has their new mailing address.
• If parents do not receive a form, they should request one from the school as soon as school starts.
• The forms are not standardized. It may contain language to this effect: “If corporal punishment is not used, the child may be subject to other punishment including suspension.” Be aware and request information about what violations are punishable by suspension and of the child’s rights if suspended.
• For children who have an Individualized Education Program, or IEP,  in place, if consequences for violations are spelled out in the plan, the school should be following the plan regardless of what is stated in the opt-out form about suspensions.
• Parents should keep a copy of all information, including the opt-out form.

Although 366 corporal punishment occurrences are horrendous, it is the lowest number ever recorded in NC. Furthermore, it is one of the lowest totals among the 19 states that still use corporal punishment. Parents who feel strongly about this issue should address their concerns with their local school board. Statewide data from the 2010-2011 school year indicate that students with disabilities receive corporal punishment disproportionately.

Linda Griffin can be reached via email at lgriffin@autismsociety-nc.org.

Why I Run and Walk for Autism

Beverly Moore is Chair of the Board of Directors for the Autism Society of North Carolina (ASNC). This guest Blog includes her comments to the participants at the recent WNC Run/Walk for Autism where she shares why it is important for parents, family members, friends, and the community to support the annual ASNC Run/Walk for Autism events. The final 2012 event, the Triangle Run/Walk for Autism, will be held this Saturday, October 13, at Moore Square in Raleigh.

My husband Alan and I are parents of a 19-year-old son Kirby who has autism. Kirby cannot tell us about his day at school. He cannot dress himself. He can’t tie his shoes. But, he loves to swim, to swing in the yard, to listen to music and watch YouTube videos, including the Black Eyed Peas: Let’s Get it Started in Here!

Kirby was 3 years old when he was diagnosed with autism. Receiving the diagnosis of autism, as many of you have experienced, throws you into the realm of the unknown, the unpredictable: What is the nature of your child? What will the future hold for your loved one and your family?

It also throws you into the realm of the uncommon: Your friends’ and neighbors’ children are developing typically and yours is not. Your friends and neighbors pick up on those unspoken social cues and your loved one does not or has difficulty. The diagnosis can be very isolating.

The diagnosis can also be immobilizing. Autism is mysterious. You hear that “if you’ve met one person with autism, you’ve met one person with autism.” Autism affects each person differently. Today with the Internet, the amount of information available about autism is overwhelming. A Google search of the word “autism,” recently resulted in 76,200,000 hits. The vast amount of information on autism can itself be immobilizing, without something or someone to guide you.

When we needed support and a compassionate ear, the Autism Society of North Carolina (ASNC) was there for us.

After attending the ASNC annual conference, joining the local ASNC parent support group and meeting the Autism Society of North Carolina’s parent advocates, I found that not only was I NOT alone, but that I was in good company. The Autism Society of North Carolina gathers together parents, teachers, medical personnel, speech pathologists, occupational therapist, psychologists, and others – all smart, energetic, fun, and dedicated to helping address the challenges often presented by autism.

At its annual educational conferences, the Autism Society of North Carolina presents autism specialists not only from our state but from around the world. The conferences and other workshops helped guide Alan and I in figuring out what we could do to improve our lives and to help Kirby become as independent and as included as he is able.

The Autism Society of North Carolina was started in 1970 by parents. It was a time when children like Kirby would have been discouraged from attending public school. Their vision was to share information, provide support to one another, and enhance the lives of their loved ones as well as all children with autism throughout our state. Your coming out today to support the Western North Carolina (WNC) Run/Walk for Autism gives me great hope that the Autism Society of North Carolina will be able to meet and exceed the vision of these founding parents by reaching out to those in the western most portion of the state, where populations may be small but presence of autism a certainty. In North Carolina the prevalence of autism is 1 in 70. Thank you for your support.

In the words of my son Kirby: Let’s Get it Started Out Here!

The 7th annual WNC Run/Walk for Autism on September 29th raised over $40,000 to support individuals on the autism spectrum and their families in Western North Carolina. The Triangle Run/Walk for Autism is the organization’s largest annual fundraising event. This year’s goal is to raise over $300,000 in funding that is needed to provide services and supports to the over 60,000 families affected by autism in our state. If you have not already donated in support of our runners and walkers, please do so by visiting www.trianglerunwalkforautism.org. If you wish to participate in the event you can register at early packet pickup Thursday and Friday or prior to the event Saturday morning. Click here for more info.

Staying 2 Steps Ahead: Safety in the Community and at Home

This week’s Blog post comes from Autism Society of North Carolina Parent Advocate/Trainer Judy Clute.

Parents worry about their children’s health, happiness, and well-being, but parents of children with autism spectrum disorder (ASD) must look at their environment closely and take great care to ensure that their kids are safe both inside and outside the home. Why is safety for the person with ASD different from any other safety measures you would put in place for any child? Here are some things to consider:

• Communication – Whether there is a lack of language or whether language is limited, this is the top reason we need to think ahead for our family members with ASD. Can they communicate to someone if they are lost or hurt? Will they be able to ask for help? Even if they are verbal, will they be able to communicate appropriately and effectively?
• Judgment – Consider that sometimes people with ASD have poor judgment. They may not recognize who is safe to go to for help. Do they know where to seek out help? Do they know who in the community is safe to go to?
• Sensory issues – People with ASD may run toward something of interest (ie: a train, a sign, music, water) or run away from something that is overwhelming (i.e. : music, loud sounds, too much commotion, lights). Needless to say, this can be a safety issue.
• Problem solving skills – Such skills may be impaired by rigid thinking, lack of perspective and/or anxiety. If your child were lost or hurt, would they know what to do next?
• Different learning styles - How can you teach your child about safety issues? Because of poor communication skills, many individuals with autism cannot share information verbally, some use visual cues, some use technology. How can they use these things in case of an emergency?

Children with ASD can be much more impulsive than neurotypical children. They may run away or wander off more than their typically developing peers. This can put them in greater danger of becoming lost, getting hurt, and becoming vulnerable to strangers. So what can we do?

“An ounce of prevention is worth a pound of cure” but for parents of a child with ASD, it may feel more like a pound of prevention is needed. But the saying holds true, it’s better to prevent a problem than trying to fix it afterwards. Here are some tips for caregivers to consider:

1. Do not isolate yourself – Inform you neighbors about your child or family member with ASD. Educating your neighbors about your child and their challenges can help if he/she ever wanders out of your home or yard. Give them your contact information and let them know what your child likes and dislikes.
2. Contact first responders – Go to your local police station, fire station, and EMS. Take a current photo of your child along with a personal information handout (available in the ASNC Safe in the Community Kit). Include as much detail as possible about your child.
3. Plan and rehearse – Does your loved one with ASD know what to do in case of a home fire? Are you prepared? The National Fire Protection Association has a great website that can help you and your family member with ASD be prepared. Their website has activities for children and a social story that can be individualized for your child. Another important skill to know involves teaching your child when and how to call 911.
4. Securing your home – Consider putting safety items in place such as a home security alarm system, window locks and/or alarms on windows and doors to alert you if someone is trying to open them. Sometimes putting a “stop” sign on doors and windows can prevent a person with ASD from going any farther. If your child runs or wanders, consider putting a fence around your home with locked gates. If you have a pool, make sure the pool is not accessible without supervision. Teaching you’re child to swim is important, but it isn’t a guarantee that it will save someone from drowning.
5. Communicate with your school – Discuss with your child’s teacher your concerns about your child’s safety. You may want to suggest that they offer a “Safety in the Community” workshop or other such training. Make safety part of his or her IEP goals. Work on how to safely cross the street, learn to recognize street signs (like “STOP”), and discuss who is a safe person and who is a stranger.

The Autism Society of North Carolina’s “Safe in the Community Kit”

The Autism Society of North Carolina can provide you (free of charge) “Safe in the Community” kits that contain some simple stickers to put in your windows to let first responders know if there is someone in the home with ASD. This simple sticker can make a huge difference in case of emergency. The kits include personal information sheets that can be shared with caregivers, first responder agencies, and others as well as ID cards that you can teach your child to carry with him or her at all times.

Kit Contents

Here are some great websites for resources to help you keep your ASD family members safe.

• www.AutismSociety-NC.org — We can help with education, resources and provide “Safety in the Community” kits
• www.mypreciouskid.com – has safety items for home and community (i.e. Signs, ID bracelets, home safety items)
• www.AWAARE.org – has several caregiver resources and tips

Adult Issues
What about adults with ASD or those with High Functioning Autism or Aspergers? These people may have wonderful spoken language but may not respond appropriately to a first responder or neighbors. They may be anxious or afraid. It is important to teach these individuals what to say in the event they are lost or hurt. They should be taught who they can trust – like a police officer, a fireman, a teacher. Introduce them to neighbors and family members that you trust. Help these individuals learn to self-advocate.

Another thing to consider is bathroom etiquette. You may wonder what this has to do with safety? Well, does your child go to the bathroom in restaurants or public parks by themselves? Most women do not realize that there is different bathroom etiquette for men than for women. Women frequently make conversation with others they may not know in a public restroom. This is not true for men. Children, especially boys, need to know not to talk to strangers in public restrooms and what to do if a stranger approaches them. Again, do they know who a stranger is? If not, teach them. They need to know how to address or respond to a policeman? They may be in a situation where it would be important to disclose that they have autism and need help. Teaching self-advocacy skills is extremely important.

Another consideration is internet safety. Many individuals have poor social skills and social judgment. For these individuals safety measures should be put in place to manage internet access – whether at home, school, or in the work place. If you have a child/young adult who is visual, place instructional picture cards directly on the computer. If they can read and understand written language, keep those rules right next to the computer and negotiate an internet use contract. Check with your ISP on safeguards. The NC Department of Justice has a website that contains several safe guards for internet safety: http://www.ncdoj.gov

Be proactive! Contact the Autism Society of North Carolina and let’s work together to keep our children and loved ones with ASD safe and sound.

Judy Clute is a Parent Advocate/Trainer in the ASNC Raleigh office. If you have any questions or concerns, please do not hesitate to contact her by email at jclute@autismsociety-nc.org or call 919-865-5091.