Home for the Holidays: The Gift of Positive Behavior Support

The holiday season is upon us!

Good food, family gatherings, festive decorations, changing seasonal weather and a break from school may provide you and your family with peace, hope and joy.   If your child struggles with changes in routines, different food items on the menu, overstimulating environments, long periods of unstructured activities or sensory issues that make long pants, socks, gloves, coats and hats feel like shards of glass against their skin, you may not find too much merriment in the coming weeks.

But it doesn’t have to be that way. All behaviors serve a purpose – they are a way for the child to solve a problem. Without the appropriate social skills our kids will do what is necessary to have their needs met in the quickest way possible. However, if we can predict problem behaviors, we can prevent them.

Set your child (and family) up for holiday success by thinking ahead about the types of routines and situations that might be challenging and then craft a plan to prevent problem behaviors or intervene early before they escalate. The first step is to create a best guess statement as a way to better understand the relationship between the behavior and the child’s environment. This summary should include a description of the behavior, what happens before and after the behavior, circumstances that set the stage and what seems to be the purpose.

Here is an example of a best guess statement:

At Grandma’s holiday gathering when someone tells my child to try a food she doesn’t like, tries to force a “please or thank you”, or scold her inappropriate behavior (what happens before), she will cry and yell loudly (a description of the behavior). When she does this, others leave her alone (what happens after). She is more likely to do this when she is tired, hungry or in a new or unpredictable situation (sets the stage). We think she engages in these behaviors to avoid unpleasant people, food or situations (purpose).

To create your own best guess statement, replace the underlined words with descriptions about your child’s behavior and surrounding circumstances. Once you have a good guess about what causes and maintains the behavior under certain circumstances (e.g., crowded or overstimulating environment, being rushed, being told they can’t have or do something they want, different expectations, demands, exhaustion, hunger) you can come up with a plan and potentially avoid a worst case scenario.

When determining the purpose or function of behavior carefully think about what typically happens (what others say or do) after the behavior occurs. Does the child get something or get out of something?  This could include seeking or avoiding attention (from adults or peers), an activity, a tangible (a toy or other object), or sensory stimulation. The behavior may be inappropriate but the reason for it usually is not.  Most of the time there is an obvious reason for misbehavior once we take a few moments to break it down into these different components.

Make a list and check it twice: prevention is key

Many behaviors can be prevented using simple proactive strategies – we underestimate the power of prevention. Using the best guess statement from above, here is an example of a list of some different strategies to prevent or reduce the intensity, frequency or duration of the behavior.

make sure she is well rested and has eaten before going to grandma’s house

bring some food to grandma’s that she likes and would recognize on her plate in case the new food isn’t appealing

extend family expectations (respectful, responsible, safe) to other settings such as Grandma’s – teach what each looks like during difficult activities (e.g., during the gift exchange respectful looks like saying thank you or smiling at the person who gave you the gift).

  • allow her to bring a comfort item (toy, book, blanket)
  • teach a signal she can show to indicate a need to take a break
  • create a social story about family gatherings and review on a regular basis
  • rehearse going to grandmas, practice the specific routines (meal time, opening gifts, playing with cousins)
  • arrive early to allow her to get comfortable before the house gets crowded
  • create a visual schedule of the events – let her cross off as each occurs

Your brainstormed list may look different than this one – but there may be similar themes. Next, select the strategies that are easiest to implement have the highest probability of working. An essential prevention strategy is teaching your child what to do instead of displaying the problem behavior. This other behavior is often referred to as the replacement behavior. The replacement behavior must achieve the same results just as quickly as the problem behavior. For example, if you teach your child a signal to let you know that she needs a break then you must ensure she gets a break as immediately as she would if she were to scream and cry. Responding quickly to the replacement behavior will strengthen it and make the other behavior no longer useful. Teaching involves demonstrating the behavior, providing many opportunities to practice, and letting the child know they did it correctly (the same way you might teach them to ride a bike or learn their colors).

All is calm: intervene early at the first sign of trouble

Be ready to prompt appropriate behavior, redirect, or offer a calming activity as soon as you notice early signs of agitation or frustration. Pre-correction is a strategy to use when you anticipate a problem behavior by prompting what they should do instead. For example, if you notice your child getting frustrated you can say, “remember, you can give me the peace signal if you need a break.” A simple redirect to another activity or topic can decrease chances that the problem behavior will escalate. Handing your child a comfort item or showing empathy can also help alleviate anxiety.

Raise the praise: giving effective positive feedback

Praise expected behavior so your child is encouraged to continue using appropriate behavior. Normally a 5:1 positive to negative ratio is an acceptable rate, however you might want to consider increasing the praise during difficult routines. Provide frequent, genuine, and specific praise. For example, you could say, “you did a nice job sharing that toy with your cousin!”

Do you hear what I hear? Responding to escalating problem behavior

Not all challenging behaviors can be prevented. A child’s ability to control their emotions can often be overestimated by adults. When a child is experiencing significant distress, they are less likely to be able to process what is going on around them — including following what may seem like simple instructions. If, despite your best efforts, the behavior escalates, plan a graceful exit and remove your child from what is causing or maintaining their behavior.  Wait for your child to be calm before addressing the issue. Learn from what worked and didn’t work and adjust your strategies next time.

Believe

What might seem fun and relaxing to adults, could be overwhelming and upsetting to children.  Children are more likely to exhibit the behavior that will most quickly get their needs met, regardless of the social appropriateness. Acting-out is typically a symptom of an underlying issue – it’s important to get to the root of the problem for long-term positive results. Prevention strategies and intervening early can be very effective – yet often underutilized. Think ahead to what can be changed in the environment to eliminate, modify or neutralize anything that might trigger a problem behavior. Support the positive behavior by teaching and reinforcing expected behavior. Ensure consistency and predictability. These small changes can make a big impact this holiday season and beyond.

Resources:

Center on the Social and Emotional Foundations for Early Learning (CSEFEL) Parent Training Modules: http://csefel.vanderbilt.edu/resources/training_parent.html#workbook

Durand, V.M. (2011). Optimistic parenting: Hope and help for you and your challenging child. Baltimore: MD: Paul H. Brookes.

 

What Will Happen When We’re Gone? Planning for the Future for Your Child with Disabilities

Decide What You Want

Thinking about what will happen to your child once you die, or are too ill to care for him or her, can be scary and raise your anxiety level. One technique is to think about what you don’t want for your child – for example, “I don’t want my son to have to live with my sister – she has three children of her own, it would be too much” or “We don’t want our daughter to have to leave our home and neighborhood”.

Do a reality check on your “don’t want” list—if your child is a minor, they may not be able to stay in the family home without an adult. Think about how they might be able to at least stay in their school, around their friends, and keep getting services from their usual providers. You may come up with more than one option, and that’s okay. An estate plan, including your will, can be flexible.

This is the most important part of the estate planning process. You will need legal documents to make sure your wishes are carried out, but making these decisions now is important. Remember, wills and other legal documents can be revisited as your child grows up and if family circumstances change.

Gather Information for Reference and Legal Documents

Gather information in four categories: Personal, Medical, Financial, and Legal Documents. There is an excellent list of what documents and information to include in an article from the Special Needs Alliance. (Click on this text to read about Estate plans)

The recommended list may seem too big to tackle, so take it one step at a time. Have a family member help and remember to keep all the information available, but safe! Some secure, easily accessible options are a locked fireproof safe, a safety deposit box (make sure someone in addition to you has access), or a password-protected computer with a cloud backup.

You Need a Will

The will contains (almost) all your instructions for how you want your child to be taken care of when you die (see Letter of Intent later in this article). Your child will need a guardian or guardianship alternative while they are a minor, and for their lifetime if you expect they will be unable to fully care for/support themselves.

If you die without a will, or if you don’t specify a guardian, a court will appoint a guardian – and it won’t necessarily be a family member. It could be someone who may be a complete stranger to your child.

When selecting a guardian, remember that you don’t need the same individual to manage your child’s finances AND personally take care of them. In fact, it’s usually not recommended for them to be that same person – we will talk more about that later in this article. Some estate planners also encourage parents to think outside the family box when naming a guardian. Think about close friends as well as your parents or siblings. If your child is older, think about adults with whom your child has a bond. This can help if you want your child to continue in their current school, job, or neighborhood.

Something we were not aware of before we researched for this article – you need to list each of your children individually when naming their guardian, even if all your children will have the same guardian. The probate court will not assume that you meant the same guardian for any children you don’t list and they could appoint a separate guardian for each of the unlisted children!

Make plans for your own future needs and for your other children. Think about who will handle what if you become incapacitated. Will you need someone to manage your finances? Make decisions about your healthcare and living arrangements? Powers of attorney and advanced healthcare directives will mean that your children and other relatives have clear directions about your needs and your wishes.

Your Child with Disabilities and Your Will…

Don’t leave your child with disabilities any money in your wills, but don’t disinherit your child either. Let us explain…

Individuals with disabilities frequently qualify for government benefits such as Medicaid, which can be essential for services and/or healthcare. Government benefits require that beneficiaries have very limited assets – a few thousand dollars at most. Inheriting money above that limit will mean that your child will become ineligible for benefits including needed services. To become eligible again, your loved one would have to spend all the inherited money on the services and benefits they no longer qualify for plus everyday expenses until the limit is reached. Then they have to reapply!

If you disinherit your child with disabilities and give the money to a family member to support your child (even if you named that person your child’s guardian), this can place a large legal burden on the family member or guardian. It also doesn’t guarantee that your child will get their needs met.

What to do instead of leaving money in your will or disinheriting your child:

Set up a Special Needs Trust, or SNT.  A trust is a legal “entity” in which assets can be placed. Trusts have a beneficiary – someone for whose benefit the trust was created- and are managed by individuals called “trustees.” Trustees can be professionals (bankers, trust company managers, attorneys), private individuals, or any combination of the two.

A SNT is a type of trust specifically designed so that beneficiaries with disabilities can get government benefits/services and still receive income to increase their quality of life. Government benefits will cover most of the basics (“needs”), monies from the trust can pay for the “wants”.  Income from a Special Needs Trust is not counted as an asset or income for purposes of most government benefit programs, but setting up the trust should only be done by a qualified attorney. If it is done incorrectly, your child’s benefits could still be at risk. You can get a recommendation or referral from your state bar association (http://shop.americanbar.org/ebus/ABAGroups/DivisionforBarServices/BarAssociationDirectories/StateLocalBarAssociations.aspx

You can arrange for the Special Needs Trust to be the beneficiary for life insurance policies and retirement plans. You can let friends and relatives know that they can give or leave money/assets to your child through the trust.). Think ahead: trustees may need to manage the trust for decades.

Letter of intent: This is a document expressing your wishes for your child.  It has no legal standing, but acts as a guide for your child’s guardians and trustees.  Do you want your child to be able to visit their grandmother and travel by air? Get a therapy not covered by Medicare or other insurance? Go to Disneyworld at least once? Take swimming lessons? Own a dog?  This is where you put those wishes. The co-trustees can figure out how to make it happen, if the trust income covers the cost.

You should also include your wishes for your child’s daily lives – school, work opportunities, living arrangements in addition to what is covered in your will.

The trustees will take your letter of intent very seriously. It is important to understand, however, that their legal duty is to your child, who is the trust’s beneficiary. If they believe that your child’s best interests are served by doing something different than you write in the letter of intent, that’s what will happen. This is why co-trustees are a good idea – one with a professional viewpoint and one with a personal viewpoint.

Special Needs Trusts for Military Families

Military members have the option to direct payment of a Survivor Benefit Plan (SBP) Annuity for their dependent child to a Special Needs Trust (SNT). There are differences between Special Needs Trusts funded by a military Survivor Benefit Plan and the civilian-funded plans discussed above. You can find out details about the differences, and how to set up this type of trust, in this article by the Military Parent Technical Assistance Center. (Click on this text to read more about the latest news on military special needs info

Guardianship…Annual Letters

Did you know that the Annual Letters of Guardianship Expire?

“Guardians are required to provide the Court with periodic reports on the status of the incapacitated person and the administration of the guardianship.  The order which appointed the guardian and subsequent orders approving periodic reports specified and period of 12, 24, 36 months; the report must be filed within 90 days of the end of the specified reporting period.” King County Local Rule 98.20, RCW 11.92.040 Continue reading “Guardianship…Annual Letters”

I want the kind with the people and the pictures

By John O’Brien

After a Difficult Start…

Institutionalized from age three to twenty-three in a place where “they treated us like animals”– Mike has composed a good life, taking many valued roles: husband, father, worker, home owner, friend, organizer, advocate, mentor, teacher, neighbor.[1] Anticipating the changes that come with aging, Mike requested funding for a person-centered plan from his case manager (a service option in his state). The case manager said that it was unnecessary for him to spend any of his budget on a plan because a new Federal Rule requires that Mike’s annual plan of care meeting be a person-centered plan. Mike, who has participated in many person-centered plans organized through self-advocacy, asked some questions about the required plan and concluded, “I still want the kind with the people and the pictures.”

Regulations that require a person-centered plan as a condition of receiving Medicaid Waiver funds introduce a distinction between Want-to-plans and Have-to-plans. Each can make a positive contribution; both must creatively respond to constraints. A good Want-to-plan supports discovery of possibilities and life direction and mobilizes a person’s allies at important moments in their lives. A good Have-to plan gives a person effective control of the Medicaid waiver funded assistance they rely on. Committed and skilled facilitators with the time necessary to prepare and follow-up make a difference to the impact of both kinds of plan. How well either process works for a person depends on conditions outside the planning process: the extent, diversity and resourcefulness of the person’s social network; the openness of the person’s community; the flexibility and responsiveness of providers of necessary assistance; the sufficiency of public funds for necessary assistance and the means for people to control those funds. Good plans will identify the current reality of these conditions and consider how to engage them.

Mike’s is a want-to-plan. At his initiative, he and his invited allies (the people) collaborate to create a customized process to address his desire to deal proactively with the new responsibilities and increasing impairments that show up with aging. Mike chose Michele, an experienced facilitator, to guide the process. Their agreement makes it clear that Michele is responsible for facilitating a process of change over time, not just a meeting.[1] A graphic record (the pictures), created by Alex, provides an energizing memory of what emerges, a way to track and update action plans, and a way to orient new people to Mike’s intentions.[2] Occasional check-ins and revisions guide continuing action. One-to-one meetings assist Mike in sorting through all the suggestions and offers of help he receives to assure a good fit with who he is. Mike will bring some the information generated by this work to inform the required annual person-centered support plan, but his Want-to-Plan does not substitute for it.

Mike’s experience unfolds under highly favorable conditions for any person-centered plan. He has a strong desire to assure his wife and himself the best possible old age. Reciprocity for decades of generous neighborliness, concern for co-workers and leadership in advocacy give him a diverse network to call on. He is not inhibited in asking for help when he needs it. The help he needs is largely with navigating the unfamiliar territory of selling and buying property and preparing wills and other necessary documents and demands no change in his current paid services. Hard work and careful management has accumulated equity in family home. Many Want-to-plans will need to include provision for strengthening or establishing the social and material conditions for moving toward a desirable future.

Want-to-plans can also originate in a person’s positive response to an invitation to join a process of organizational change. This sort of plan poses a challenge that an organization must stretch its capacities to meet.

Have-to-plans are a necessary step in determining expenditure of Medicaid funds on services to meet the assessed needs of eligible people. They are the final responsibility of system staff assigned to coordinate services. While the process can vary to accommodate a person’s preferences, the process and resulting plan must comply with detailed standards. The New York OPWDD Person Centered Planning Regulation Checklist enumerates 23 requirements, 21 of which track US Federal Regulations.[3]

Have-to-plans serve a worthy purpose. The rules set conditions for the person to direct the meeting, understand the results and assure that the person-centered service plan documents the person’s needs strengths, preferences, goals and appropriate services.

This checklist item, based on a Federal requirement, identifies the intended result of Have-to plans:

2‐5. The plan documents the necessary and appropriate services and supports that are based on the individual’s preferences and needs and which will assist the person to achieve his/her identified goals. [Complies with CFR 441.301©(2)(v)]

This form of words sets Have-to-plans in the context of publicly funded disability services. Offering increased influence on which available provider(s) will serve a person and how those services will be of assistance is a clear benefit of Have-to-plans when there is a real choice among providers with a capacity to individualize supports.

This standard also locates a tension that constrains Have-to-plans as two impulses struggle with each other within the same sentence. One impulse, energized by commitment to self direction and the development of people’s strengths, expresses the life a person wants to live and the supports that they prefer to live that life. The other, tied to the historical anomaly of funding US disability support as if it were a medical service, aims to select necessary and appropriate services that are clearly linked to professionally assessed need. State policy can bias the struggle toward one impulse or the other. In some states[1] the person centered plan is bracketed between an assessment of need that involves an extensive inventory of a person’s deficiencies and writing an Individualized Service Plan (ISP) that must demonstrate a direct connection between assessed need and specified services and avoid public funding of “wants” or “lifestyle choices”. Without the skillful facilitation of an intentional shift in perspective, a Have-to-plan will be primed by a focus on deficiencies and develop within unconscious boundaries set by judgements of what can realistically be funded.

A Want-to-plan can safeguard a Have-to-plan. A person and those who care can choose to create a space outside the world of disability services for conversation about a person’s identity, gifts and capacities and the circumstances that offer the best life chances. Often, as with Mike, some action will result from this conversation that requires no change in publicly funded services. When the sort of changes in services that require a Have-to-plan are necessary, a person and their allies have a foundation for negotiating what they need from publicly funded services.

____________________________________________________

[1] See for example, NJ Division of Developmental Disabilities (March 2016). Supports Program Policies & Procedures Manual (Version 3.0).

[1] Other agreements might suit other circumstances. A different person might agree to fill the necessary follow up role.

[2] Denigrating graphic records has become a cliche criticism of person-centered planning (“people have colorful pictures on their walls but their lives are unchanged”). Lack of commitment or capacity for creative action seem to me more likely causes of inaction than a vivid record of people’s thinking does.

[3] http://www.opwdd.ny.gov/sites/default/files/documents/PCPChecklist.pdfThe 22nd standard, specific to New York, defines a person-centered planning process as a right and requires written notice of that right. The 23d assures that all relevant attachments are filed with the plan. The rule itself, Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for Waivers, Provider Payment

Reassignment, and Home and Community-Based Setting Requirements for Community First Choice (Section 1915(k) of the Act) and Home and Community-Based Services (HCBS) Waivers (Section 1915(c) of the Act), was published in the Federal Register on January 16, 2014.

[1] You can view Mike’s witness to growing up in an institution and a snapshot of his life today in this 2015 TV investigation into his state’s continuing operation of institutions: http://www.king5.com/news/local/ investigations/wash-decades-behind-in-serving-developmentally-disabled-1/48265785

 

Preventing the Tidal Waves of Challenging Behavior at Home this Summer

By Kelcey Schmitz, MSEd
Center for Strong Schools
University of Washington Tacoma

The Whole Child Initiative (WCI)

The Whole Child Initiative (WCI) at the University of Washington Tacoma’s Center for Strong Schools helps schools, families, neighborhoods and community programs to create sustainable nurturing environments that support the academic, behavioral, social and emotional development of children. One essential element of the “whole child” approach is Positive Behavior Interventions and Supports or PBIS.

Imagine living in a world where 80-90% of problem behaviors were prevented through teaching and reinforcing social norms. Positive Behavior Interventions and Support (PBIS) is a term used to describe an approach that is different from more traditional behavior management practices of harsh punishment, humiliation and pain to change what someone is doing.

PBIS offers a framework that allows for a graduated continuum of proactive support. As the intensity of the behavior increases, so do the levels of interventions. Much like how public health prevention is structured, PBIS uses a three-tiered method to organize and deliver strategies to prevent, reduce and reverse challenging behavior.

Researchers have found that frequent harsh punishment is unlikely to effectively change behavior. While there may be short-term benefits, if the child doesn’t learn a more socially appropriate behavior to do instead, the problem behavior is likely to continue.  The parent-child relationship is strengthened by loving and positive interactions and can be negatively impacted by overly harsh punishment.

Tier 1 support, sometimes referred to as universal prevention, involves defining, teaching and reinforcing expected behaviors or pillars. Much like we are all taught about the importance of hand washing to prevent illness and are frequently reminded in public restrooms, we teach and model what we want to see (i.e., respectful, responsible, and safe behaviors) and reinforce when we see those things.

Some children will need additional support that is more technical in one or more of the expected behaviors. Advanced tiers of prevention and intervention (Tier 2 and Tier 3) require a more comprehensive approach. However, when added to an existing layer of prevention, they are more likely to be successful.

Summer evokes a range of emotions for parents. We look forward to all that summer has to offer, a break from hectic schedules, beautiful weather, heading to the beach, trails, or the ballpark and much more. On the other hand, we know that most of our kids thrive in more structured and engaging environments – given all the demands in the family home, this can be a challenge.

Support positive behavior at home by trying the following strategies.  Get a start on them now and ride the waves smoothly through the summer!

Define, teach and routinely acknowledge family pillars or expectations.

Discuss how you want to live as a family and identify some words (pillars or expectations) that represent what you value. Then define and teach what those things look and sound like in every day routines. Some common pillars include respectful, responsible, and safe. Stick with 3-5 positively stated expectations – it’s easier to remember a shorter list.

If you expect it, you must reach it. Identify a couple of “hot spots” to begin. Problem behaviors occur within routines.  Perhaps, it’s the morning routine or mealtime you anticipate being especially difficult. After discussing 1-2 ways to be respectful, responsible and safe in the morning, teach what each looks like. Have fun with it! Set up “expectation stations” and assign each family member one pillar to teach to the rest.

Behaviors that get attention – get repeated. Initially, recognize each time you observe your child doing the right thing. In fact, create opportunities for our child to experience success! Make sure you are specific, “Son, I noticed you stopped to pick up your shoes in the hallway. Thanks for putting them away and keeping the walkway safe for others.” The easiest way to change a behavior is to point out what a person does right.

Remember this catchy phrase, “5:1 gets it done” to ensure you are having five positive interactions for each negative interaction. As the behavior begins to occur frequently, reinforcement can be faded.

Create engaging and predictable routines

Children crave structure and routine. Even though we, as adults, look forward to a relaxing evening or weekend, our kids need regular activity and engagement. Consider the following – we can either keep them busy or they will keep us busy!

Use visuals to create predictability. Put together a visual schedule that represents the major routines of the day. You can cut out pictures, draw them, use a dry erase board or use actual pictures of your kids participating in each daily routine. Create the schedule together!  Ask your child to check the schedule – especially when moving from a preferred to non-preferred activity. It’s hard to argue with a picture!

Set the stage for positive behavior

Teach, pre-teach and re-teach. Just like we teach our children their colors and shapes, we also must take the same instructional approach and apply it to behavior. When your child is first learning the skill or for more difficult routines when you anticipate a problem, pre-teach. Give a quick reminder ahead of time – “when we get in the car, sit up, buckle up, and smile!”

Give transition warnings or cues to signal the end of one activity and the beginning of the next to allow time for your child to move from one thing to the other. This is especially helpful when you ask your child to stop doing something they enjoy and move to a less preferred activity. “In five minutes it will be bath time.”

The first/then strategy can be used to let children know there will be a preferred activity after doing something they don’t like. “First take your bath, then we can play with your dolls.”

Give more start than stop messages. “No”, “don’t”, and “stop” are phrases children hear so frequently that they sometimes tune them out and only hear the verb. Tell your child exactly what you want them to do, “take your plate and put it in the sink.” Do your best to reserve the stop messages for dangerous situations to get your child’s attention quickly.

Giving choices helps to support your child’s development and eliminates the need for a power struggle. “Would you rather play for 5 more minutes or get in the bath now?”  “Feel free to choose the pink pajamas or green ones.”

While these strategies may not completely eliminate problem behaviors you may find that it creates consistency, predictability and a more positive atmosphere for your family. When challenging behaviors persist, a solid foundation of expectations will allow you to quickly build another layer of support for your child.

See the following for additional information, parent support and resources:

Books:

Parenting with Positive Behavior Support: A Practical Guide to Resolving Your Child’s Difficult Behavior 

Websites:

The Association for Positive Behavior Support

Getting Behavior in Shape at Home

Family Resources for Challenging Behavior