Positive Behavior Supports: Continuing the model at home and in the community

By: Dr. Vanessa Tucker, PhD., BCBA-D

What is Positive Behavior Support?

Positive Behavior Support (PBS) is a special education initiative that informs school districts, schools and classrooms regarding prevention and intervention practices designed to teach and reinforce pro-social behaviors. Behavior supports, as we parents well know, do not end at the schoolhouse door. Interfering behaviors can and do continue to manifest themselves in other settings and present a real and present challenge to parents and caregivers raising children with special needs.

The field of PBS is built on the premise of universal interventions that are designed to teach behaviors that prevent negative or challenging ones from occurring. These universal interventions, or Tier I, are effective for most children, but approximately 15 to 20% will need something much more intense in order to experience success. These children require what are known as Tier II and Tier III Interventions. Tier II interventions are designed to address the 15% who need more focused interventions. These may be temporary or may be needed on an ongoing basis. A small number of children (approximately 5%) will require intensive interventions, or Tier III, designed to support the most challenging behaviors. As a parent, you may find that problematic behaviors are a top priority for you due to your child’s unique needs. Parents can benefit from applying the same basic system of PBS in the home and community in order to mitigate the presence of interfering behaviors as well as teaching and reinforcing acceptable replacements. The focus of this brief article will be on prevention tactics that parents and caregivers can implement in the home and community.

Prevention as Intervention

Challenging or interfering behaviors occur for a wide variety of reasons. In many cases a communication breakdown is the “culprit.” In other words, children who have communication delays often resort to behaviors we don’t want in order to let us know what they do want! Children may also engage in challenging behavior due to stress, fatigue, unmet needs for attention, or because they have learned a habit that “works” for them. For example, the child may engage in mild to moderate aggression toward a parent when they first arrive at home as a means of accessing attention. This is problematic as the child inevitably is reinforced for these behaviors when the parent provides the designed attention. The first order of business in PBS is to teach and reinforce behaviors and/or to change our own practices as a means of prevention. In addition, it is strongly recommended that you work with your school team and utilize the Functional Behavior Assessment (FBA) and Positive Behavior Intervention Plan (PBIP) to guide your interventions at home. Pay close attention to the described “function” or reason(s) why your child engages in challenging behaviors. You’ll want to plan your interventions based upon those hypothesized functions. For example, if your child’s aggression is due to escape from unwanted tasks, you’ll want to find ways to help him escape (e.g. ask for a break) successfully. Remember that whatever you select as an intervention should be acceptable to you and your family.

In order to be efficient, you will want to analyze the various times, areas and places where challenging behaviors are most likely to occur. Create a simple matrix of your activities and rate your child’s behaviors as (a) non-problematic, (b) somewhat problematic, or (c) very problematic. Target those areas that are “very problematic” first. Decide what could be creating or maintaining the problematic behavior. Is your child in need of communication supports? Does he understand what is expected of him? Does she need more visuals in order to do what you want? Is her need for attention being met in ways that are unacceptable? Are there sibling issues? Tackling the most difficult areas first will bolster your ability to dive into the smaller issues later and may actually address them inadvertently through your interventions with the bigger ones.

The following table (Table 1.0) presents a list of general recommendations and justifications for prevention of challenging behaviors at home or in the community.

Table 1.0 Tactics for Prevention of Challenging Behaviors

TacticRationaleExample
Non-Contingent Reinforcement/Planned AttentionYour child may need your attention and will engage in whatever behavior necessary to obtain it. You want your child to obtain your attention without having to engage in mild to moderate behaviors to receive it.When you come home spend the first 10 or so minutes with your child before you check email, answer the phone or do anything else. Plan this and stick with it. Give your child (or children) your undivided attention before you do anything else.
Schedules-Visuals and/or WrittenYour child may need the same structural supports that they use in the school setting in order to predict what is coming, what is done, and what is expected of them. They may not be able to predict these things as successfully if given with verbal prompts only.Create and use schedules with visuals or words for family routines. This might include an activity schedule for evening activities, for a bathing routine or a trip to the store. Rely on your school staff for support in this area. They can assist you to build and use these systems.
Transition Schedules and ObjectsYour child may need more information than you require in order to successfully understand and navigate transitions. You may need to provide him with more information about what is coming and what will happen. Challenging behaviors may result from a breakdown in understanding what is coming or what is expected.Create a transition schedule such as a white board with icons and/or line drawings. Some children benefit from a basic checklist that they can “check off” as they go. Others need a transition object (e.g. a teddy bear, or something else that is comforting) in order to successfully navigate transitions.
Demand-free time after schoolAll children are tired to some degree or another after school. For some children, the social demands of school have left them with very little in the “tank” at the end of the day. Behaviors may occur because the child needs rest from social and other demands.Consider providing 30 minutes or more of demand-free time (e.g. no homework) after school. Pair this with a timer and allow the child to engage in something that is soothing, restful and relaxing. Don’t pair this with their favorite and most reinforcing activity-save that for after they complete what you want later in the evening, especially if that involves homework or chores. Engage them in a schedule with demands (homework and chores, etc.) after a period of rest.
Homework and ChoresA child may balk at the idea of homework and/or chores, which are regular expectations of most parents after school. You may find that children engage in a lot of challenging behavior around these two areas.Consider the rest time after school as the first line of defense. Then, consider using a visual system that breaks down what they have to do, how long they have to do it, and when they are finished. Break things into smaller pieces (called “chunking”) and consider pairing with breaks in between each piece. Show visuals of what you expect the finished product to be. For example, what does a clean bathroom look like? Show each part in a picture format.
Token SystemYour child may not be particularly motivated to engage in things that are outside of his/her interest area. Challenging behaviors may occur despite your efforts to provide visual structure and break things into smaller pieces. She may need a more tangible way to motivate her to comply with what you want.Consider adding in a token system designed to provide reinforcement for desired behaviors. If possible, mirror the ones used at school if they are effective in motivating the child to comply. Creating a “First, then” procedure allows the child to see that after they do what you want, they will get something that they want. For example, “first clean bathroom, then 20 minutes of iPad” is a reasonable expectation. Provide tokens (stickers on a chart, poker chips on a velcro board) for each step of the bathroom clean up. Make sure you follow through with the earned reinforcer once they’ve complied.

Summary

Challenging behaviors in the home and community are never easy for parents or caregivers to address. Working with your school team, you can come up with ways to support your child so that they understand what you want and have the tools to engage in replacement behaviors that are acceptable to everyone. Many children with disabilities benefit from the same basic principles of PBS that are used in schools. A focus on prevention can decrease stress, increase compliance and teach replacements that lead to better behavior in all settings.

When your loved one has to be admitted to the hospital

When your loved one has to be admitted to the hospital, it can be scary, stressful, and at certain points very overwhelming not only for you, but also for the person needing the health care.  What I have learned after caring for my son who was born at 26 weeks and experiences hydrocephalus (cerebral spinal fluid does not drain properly and requires a shunt to drain the fluid to his peritoneum) is that when he is in the hospital, I never leave him alone.  I have always been deeply involved in his health care, much to some nurses’ and doctors’ irritation…  However, after what we have experienced in the hospital, I believe it is vital that your loved one has an advocate to ensure the best care possible is delivered and also to help when a nurse or certified nursing assistant can’t get to the room quick enough to assist.  For example, if your loved one is receiving intravenous antibiotics, which can cause explosive diarrhea or potentially life threatening allergic reactions, sometimes it can take 5 – 15 minutes for someone to respond to a call button. By that time the situation can be much worse if your loved one is alone.

During one hospitalization, my son developed Red Man Syndrome, which is a sudden allergic reaction to vancomycin.  One minute he looked fine and literally two to three minutes later, he was red from his chest up to his forehead.  After pushing the call button and waiting one minute with no response, I ran to the nurses’ station, where no one was there, found a nurse down the hall and demanded to have the IV stopped.  The nurse had the nerve to argue with me that she didn’t think my son was having an allergic reaction.  I demanded again to have the IV stopped and for her to call the doctor.  While she was calling the doctor, I googled allergic reactions to vancomycin and discovered Red Man Syndrome where 47% of people receiving IV vancomycin develop the allergy.  When the nurse came back, I showed her the information and she was shocked.  I’ve even had to ask phlebotomists (technicians who draw blood) to put gloves on before they take blood or start an IV on my son.

The unfortunate reality of what happens in hospitals is that many staff are overwhelmed, may have had a mediocre education, or perhaps chose health care for less than authentic reasons.  I have witnessed nurses purposely medicate a loved one in order to make their day more manageable.  I have personally experienced less than adequate health care while hospitalized for preterm labor and miscarriage, and I look back now realizing that these events occurred while I was alone.

Here are some helpful hints to prepare for a potential hospitalization:

Do your homework about your local hospitals. The Joint Commission is an independent, non-profit organization that accredits and certifies over 20,000 health care facilities in the nation.  They have an online “Quality Check” tool where you can see how your local hospitals are rated (http://www.qualitycheck.org/consumer/searchQCR.aspx). Another safety rating organization called the Leapfrog Group is composed of a group of large employers that came about to discuss how they could work together to use the way they purchased health care to have an influence on its quality and affordability.  They collect data on hospitals all over the nation and produce a Hospital Safety Survey that consumers can check (http://www.leapfroggroup.org/).

Evaluate your doctors and health care staff.  Do they listen?  Do they respond in a timely manner?  Do they treat you with respect and compassion?  Do they empower you to manage your own health care?  Are they open to holistic options and discuss the importance healthy nutrition and exercise?

Empower yourself with information about any diagnosis your loved one may experience, treatment options, and any local, state or national organizations specializing in that health condition.  Your state Family to Family Health Information Center can help you with that (http://www.familyvoices.org).  PAVE supports the WA State Family to Family Health Information Center and you can contact Jill McCormick, the Program Director at JMcCormick@wapave.org .

One of my colleagues at PAVE shared this helpful hint:  Have an overnight bag packed and in the trunk of your car because you never know when you might have a medical emergency with a loved one.

Establish a local network of friends and family members who can support you when you need a break.

Ask questions to medical staff about what drugs or procedures are being used, why, and any side effects.  Insist they wash hands when they come in the room or use gloves.  Understand there is a reason it is called “the practice of medicine.”

Use medical alert bracelets to identify allergies, implanted devices or diagnoses.  These tools can be vital in alerting emergency personnel if you or your loved one is unconscious.

Complete your own advance directive and help your loved one complete it as well.  After experiencing the tragic death of my mother who did not have an advance directive, my sister and I had to witness her suffer because her husband insisted on ineffective life support.  My son and I have completed ours and we carry them with us.

According to the Leapfrog Group, “there are more deaths in hospitals each year from preventable medical mistakes than there are from vehicle accidents, breast cancer, and AIDS.”  During my son’s last hospitalization in 2012, my father who was, at the time, CEO of Providence Alaska Medical Center, leaned over to me while we were in the emergency room and whispered, “Don’t leave him alone.”  So I didn’t. And I will not. Not for as long as I live.

 

Healthcare in Transition

There are many transitions in the life of a child impacted by disabilities.  One transition that is often set on the back burner is the medical transition from pediatric to adult care.  This transition can be significant for a young adult with developmental or intellectual disabilities because they then become the individual responsible for their own care and for communicating their needs to their new physician, who may or may not have worked with an individual with an intellectual disability before.

It is important for these families to check with their child’s pediatrician at or around age 15 to see if their practice has transition planning and a physician that they work with.  If there is not a system already in place at your doctor’s office, you’ll need to do the work yourself.  The key for any parent or guardian is to stay informed and to work with your teen on how to communicate with the medical staff at the clinic.  If you have a young adult that is non-verbal or has very little language mastery, you can make a huge difference in youth participation by using a them to say how they are feeling, what they need, and any questions they may have that can be worked out ahead of time.  A good tool to bring to each appointment is an information pager that says who they are, ID numbers, insurance numbers, what their medical conditions are, what their medications are, unique issues to watch out for, and the concerns and/or reasons for the visit is also a good tool to bring to each appointment. To help lessen anxiety and help with communication, talk with your youth ahead of time, practice what to talk about, what questions they might ask and what the appointment is going to look like.  There are tools online that help with communication and getting ready for a doctor’s visit.  One very good tool is at http://hctransitions.ichp.edu/gladd/  They suggest using an acronym “GLADD” to help individuals remember important ways of letting medical staff know what they need and what is important.

GLADD stands for:

G(ive) – Give information about how you are feeling and what you have done to stay healthy

L(isten) – Listen carefully to your health care providers and learn to

A(sk) – Ask your doctors the questions you have about your health

D(ecide) – Decide at every visit with the healthcare professional decisions need to be made about what to do next

D(o) – Do your part in following the plan.

This web site has a lot of interactive tools and videos that are great for modeling with youth and helping them hear from others in their situation.  Other such tools can be found at: http://healthytransitionsny.org   and at http://cshcn.org/teens/
If your teen or young adult feels the need for support while in the doctor’s office they will need to sign a release giving their guardian or caregiver permission to be a part of the office visits, allowing you to to receive information concerning any treatment plan.  From age 18 on, the young adult will be asked to sign off on any medical treatment or services they may require, including medication, surgeries and therapies. Because of this, it’s important to research adult providers, and even visit their offices, to see if they have worked with individuals with complex needs, have a good referral process, and understand the complexities of working with adults with developmental/intellectual disabilities.  Just as you were an advocate for your child in the school system, it’s just as important to stay connected in the medical system as well.