Home for the Holidays: The Gift of Positive Behavior Support

A Brief Overview

  • This article provides examples and simple guidance about how to be more strategic in parenting a child who struggles with behavior—during the weird winter of 2020 and beyond.
  • PAVE consulted with University of Washington positive behavior support expert Kelcey Schmitz for this article.
  • Anticipating trouble and making a best guess about the behavior’s “purpose” is a great place to start.
  • Listen and look for opportunities to praise expected behavior. It’s easy to forget to pay attention when things are going well, but keeping the peace is easier if praise is consistent while children are behaving as expected.
  • Read on to gift the family with a plan for improving holiday happiness.

Full Article

Holidays can be challenging for families impacted by disability, trauma, grief, economic struggles, and other stressors. Holiday season 2020 has its own flavors of confusion. Families with children who struggle with behavior may want to head into the winter with plans in place. Anticipating where trouble could bubble up and developing a strategy for working it out provides all family members with opportunities for social-emotional growth, mindfulness, and rich moments.

PAVE consulted with a University of Washington (UW) expert in positive behavior supports to provide insight and information for this article. Kelcey Schmitz is the school mental health lead for the Northwest Mental Health Technology Transfer Center, housed at the UW School Mental Health Research and Training (SMART) Center. An area of expertise for Schmitz is Multi-Tiered Systems of Support (MTSS), a framework for schools to support children’s academic, social, emotional, and behavioral strengths and needs at multiple levels. An MTSS framework makes room for Positive Behavioral Interventions and Supports (PBIS). When done well, PBIS teaches and reinforces positive social skills, communication strategies and “restorative justice” (working it out instead of punishing).

“This holiday season may present additional challenges given the pandemic,” Schmitz says. “Families, like educators, need to go back to the basics during times of stress and uncertainty. Remembering core features of PBIS at home, such as predictability, consistency, safety, and positive interactions are going to be key. In fact, lessons learned during stay-at-home orders during the pandemic can and will carry us through the holidays and beyond. Never before have routines, regulation, relationships, and reinforcement been more important for everyone in the family than they will be this winter.”

Schmitz has provided articles and content to support PAVE families over the years and offers the following tips for navigating the holidays by using PBIS strategies at home.

Make a list and check it twice to know what troubling behaviors are about

Whatever the holidays mean and include, family routines can shift. Food can look and taste different. The house may be decorated in a different way. School takes breaks. Weather changes, and sunrise and sunset are closer together.

Children may struggle 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.

Keep in mind that all behaviors serve a purpose; they are a way for the child to solve a problem. Without appropriate social skills, children will do what is necessary to have their needs met in the quickest way possible. However, adults who can predict problem behaviors may also be able to prevent them.

TIP: Anticipate trouble and make a best guess about the motivation

Set your child (and family) up for holiday success by thinking ahead about the types of routines and situations that might be challenging. Craft a plan to intervene early, before a full-blown escalation.

Create a best guess statement to better understand the relationship between an unwanted behavior and the child’s environment. Summarize what usually happens by describing:

  • The behavior (tantrum, hitting, refusal)
  • Circumstances that set the stage (what’s going on right before the behavior?)
  • What happens after the behavior (time out, angry adults, something removed or given)
  • A best guess about the child’s motivation/the “purpose” of the behavior (to get something or get out of something)

Here is an example:

At Grandma’s holiday gathering, an adult encourages a child to try a food, demands a “please” or “thank you,” or scolds the child. Note if the child is tired, hungry, or uncomfortable in an unusual or unpredictable situation. These are the circumstances that set the stage.

The child cries and yells loud enough to be heard in another room (description of the behavior).

During the child’s outbursts, others leave her alone (what happens after the behavior).

Best guess about the purpose? The child may want to avoid unpleasant people, food, or situations.

Making a good guess about what causes and maintains the behavior (crowded or overstimulating environment, being rushed, being told they can’t have or do something they want, different expectations, demands, exhaustion, hunger) can support a plan and potentially avoid worst-case scenarios.

Determining the purpose or function of a behavior may require a closer look at what typically happens (what others say or do) after the behavior occurs. The behavior may be inappropriate, but the reason for it usually is not.  Most of the time there is a logical explanation. Here are some questions to help think it through:

  • Does the child get something–or get out of something?
  • Does the child generally seek or avoid something, such as:
    • Attention (from adults or peers)?
    • Activity?
    • Tangibles (toys/other objects)?
    • Sensory stimulation?

Make a list and check it twice: Prevention is key

Many behaviors can be prevented using simple proactive strategies. Adults can use their best-guess statement to build a customized strategy. Here are some starter ideas that might help prevent or reduce the intensity, frequency, or duration of unwanted behaviors:

  • Make sure the child is well rested and has eaten before going out.
  • Bring food that is familiar and appealing.
  • Anticipate challenges, and plan accordingly.
  • Pre-teach family expectations (respectful, responsible, safe) and talk about how those expectations work at grandma’s house: “When someone gives you a present, say thank you and smile at the person who gave you the gift.” For information about developing family expectations, see PAVE’s article, Tips to Help Parents Reinforce Positive Behaviors at Home.
  • Encourage the child to bring a comfort item (toy, book, blanket).
  • Give more “start” messages than “stop” messages.
  • Teach a signal the child can use to request a break.
  • Create a social story about family gatherings; review it regularly.
  • Rehearse! Practice/pretend having a meal at Grandma’s house, opening gifts, playing with cousins, and other likely scenarios.
  • Arrive early to get comfortable before the house gets crowded.
  • Create a visual schedule of events, and let the child keep track of what’s happening or cross off activities as they happen.

Respond quick as a wink: Reward replacement behavior

An essential prevention strategy is teaching what to do instead of the unwanted behavior. “What to do instead” is called replacement behavior. To be effective, the replacement behavior needs to get results just as quickly and effectively as the problem behavior.

For example, if a child learns a signal for taking a break, adults need to respond to the signal just as fast as they would if the child starts to scream and cry.

Responding quickly will strengthen the replacement behavior and help make sure that the unwanted behavior is no longer useful.

Here are steps to help teach replacement behaviors:

  1. Demonstrate/model the wanted behavior
  2. Provide many opportunities for practice
  3. Let the child know they got it right (as you would if they learned a skill like riding a bike, writing their name, or saying their colors)

Praise a silent night

Inspect what you expect. Listen and look for opportunities to praise expected behavior. It’s easy to forget to pay attention when things are going well, but keeping the peace is easier if praise is consistent while children are behaving as expected.

Evidence indicates that children’s behavior improves best with a 5:1 ratio of positive-to-negative feedback. Increasing positive remarks during difficult times—such as holidays and pandemics—might reduce escalations.

Provide frequent, genuine, and specific praise, with details that help encourage the specific behavior being noticed. For example, say, “You did a nice job sharing that toy truck with your cousin!”

All is calm: Intervene at the first sign of trouble

Be ready to prompt appropriate behavior, redirect, or offer a calming activity when there are early signs of agitation or frustration.

  • Provide early, clear instructions about “what to do instead,” using language and modeling consistent with what was pre-taught and practiced (see above).
  • For example, if a child is getting frustrated, say, “Remember, you can give me the peace signal if you need a break.”
  • Redirect the child to another activity or topic when appropriate and practical.
  • Hand the child a comfort item (stuffed animal, blanket).
  • Show empathy and listen actively: “It seems like you’re having some big feelings right now. Want to talk about it?” After listening, maybe say, “Wow, that’s a lot to feel.”

Do you hear what I hear? Heed alarm bells when plans need to shift

Not all challenging behaviors can be prevented, and adults may overestimate a child’s ability to control emotions. A child experiencing significant distress may be unable to process what is going on around them and follow what may seem like simple instructions.

If an adult’s best efforts are unable to prevent or diffuse a behavior escalation, a graceful exit may be the best strategy. It’s important for adults to remember that a child’s crisis isn’t their crisis. An adult’s ability to remain level-headed is critical, and children may ultimately learn from the behavior they see modeled.

Wait for a child to calm down before addressing the issue: An overwhelmed brain is not able to problem solve or learn. Later, everyone can review what worked or did not work in order to adjust the strategy for next time.

Believe: Be a beacon for hope

Support a child to learn, practice, and perform behaviors that enable fun, rich family experiences. The work may feel challenging—and the scale of the project may be impacted by a unique set of tough circumstances—but expecting and accepting the challenge enables the whole family to move toward new opportunities. Trust that the work will pay off—and relish the moments of success, however large or small. Believe that consistency and predictability can make a big impact this holiday season and beyond.

Here are a few points to review:

  • 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 examine the root of the problem for long-term positive results.
  • Prevention strategies and intervening early can be very effective, but they are often underutilized. Plan ahead to eliminate, modify, or neutralize what might set off behavior.
  • Support wanted behaviors by teaching them, practicing them, modeling them, and making them consistent sources for praise and encouragement.

Resources:

COVID-19 Handbook and Family Binder (multiple language options) from the Autism Intervention Research Network on Behavioral Health (airbnetwork.org)

The Comprehensive, Integrated Three-Tiered Model of Prevention (ci3t.org) provides videos and other COVID-Related Resources for Families in English and Spanish

The Center on Positive Behavioral Interventions and Supports (PBIS.org) provides a downloadable booklet (English and Spanish) for Supporting Families at Home with PBIS

Parent Training Modules from Vanderbilt University’s Center on the Social and Emotional Foundations for Early Learning (CSEFEL), available in English and Spanish

YouTube video interview with Mark Durand, author of Optimistic Parenting: Hope and Help for You and Your Challenging Child

Response to Intervention (RTI) – Support for Struggling Students

Brief overview

  • Students struggle in school for different reasons.
  • RTI is an acceptable way of identifying students with learning disabilities.
  • RTI isn’t a specific program or type of teaching.
  • RTI works on a tier system with three levels of intervention.

Full Article

Students struggle in school for different reasons. Response to Intervention (RTI)  can help by combining high quality, culturally responsive instructions with assessments and interventions that are proven to work by evidence from research.

RTI was originally recognized in the 1970s as a system for helping students with potential learning problems early, instead of waiting until they fail. With the reauthorization of the Individuals with Disabilities Education Act (IDEA) in 2004, RTI was noted as an acceptable way to identify students with learning disabilities. RTI can help students who haven’t yet been identified as eligible for special education or those who struggle but don’t qualify for special education services.

At any time during the RTI process, parents or teachers can request an evaluation for special education services.  The evaluation can determine whether a student qualifies for an Individualized Education Program (IEP) or accommodations through a Section 504 Plan. RTI does not replace a school’s responsibility to evaluate students who might qualify for special education services. See PAVE’s article on Child Find, a mandate of the Individuals with Disabilities Education Act (IDEA).

RTI’s goal is for schools to intervene before a student falls too far behind. RTI is not a specific program or type of teaching, but rather a proactive way to check in with a student to see how things are going. Data help school staff decide which types of targeted teaching would work best for the student. If a student’s progress is slow or stagnant, then teachers adjust based on the student’s needs. 

RTI has three levels, or tiers, for intervention:

  • In the general education classroom
  • In a special education classroom, resource room, or small group
  • For an individual student

RTI works best when parents are involved

Parents can monitor their child’s progress and participate in the process. Parents can talk to the school about which instructions or reinforcements are working and boost the benefit by being consistent with the same strategies at home.

As military families move from one location to another, they may notice that each school uses different techniques to implement RTI programs.  Schools will format their programs to best fit the needs of their students by using a variety of tools to improve learning for all students. Keeping up with what’s happening at school might be challenging but can help the student find success.

RTI is part of a Multi-Tiered System of Supports (MTSS) framework.  MTSS provides a method for intervention in academic and non-academic areas, including Social Emotional Learning or behavior support. MTSS is used to support adult students and professionals as well. In this video, a researcher from the American Institutes for Research, Rebecca Zumeta Edmonds, Ph.D., discusses differences between MTSS and RTI.

PAVE has an article that describes MTSS and how it can provide a larger framework for Positive Behavior Interventions and Supports (PBIS), when a child’s behavior becomes a barrier to learning.

For more information on RTI, MTSS, and PBIS:

The Three RTI Tiers

Center on Response to Intervention

Response to Intervention (RTI)

 What is the Difference Between RTI and MTSS?

MTSS: What You Need to Know

Positive Behavioral Interventions & Supports (PBIS) in Schools

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

 

Assistive Technology

Assistive technology (AT) can dramatically affect the success of your special needs family member.

AT can give students equal access to curriculum, the work environment, or any other environment that use government funding.  Assistive Technology includes devices that are used by individuals in order to perform functions that might otherwise be difficult or impossible.

The AT can compensate for the impairments of the disability, increase classroom participation, foster independence, improve learning and working, assist in communication, and help the individual become successful in multiple aspect of life. In the school environment, assistive technology accomplishes these goals by allowing students with many types of disabilities to see, hear, read, write, and communicate.  In fact, assistive technology often provides the student with the only access to the general curriculum.

People who use AT products and services may have difficulty speaking, typing, writing, remembering, pointing, seeing, hearing, learning, walking, breathing, etc.  Everyone uses assistive technology.  We may not think that the things we use on a daily basis to make our life a little bit easier, like alarm clocks, planners, computers, talk to text software, canes, automatic windows and doors, lined paper, stools or chairs, the list could go on and on.  An individual with special needs may rely on AT devices to perform tasks and be more independent, enriching their life.

AT devices are protected under the law. This means that if there is need for an individual, then the use of the devices cannot be denied.  The Individuals with Disabilities Education Act or IDEA is the federal special education law that addresses services for children with disabilities, set into law in 1975. IDEA requires that states provide a free appropriate public education for children with disabilities, including related services. This law requires schools to provide necessary assistive technology devices and services to help children with disabilities receive an appropriate education. To that end, every child with a disability must be considered for assistive technology.

Section 504 of the rehab act protects qualified individuals with a disability in the US from discrimination in any program or activity receiving FEDERAL FINANCIAL ASSISTANCE—for instance: government offices, banks, educational institutions, hospitals and clinics, etc. So, if money can be traced back to the federal government through grants, loans, tax breaks, and the like. then this law is applicable.

When selecting AT devices, evaluating the product or device is critical.  The goal is to help or improve function, access or ability, not hinder or impede it.  Following the steps below can help us narrow in on the selection process.

Consider: Look at what tools are available and how they may restrict or support skills by doing a skills assessment. With an assessment, we are looking at the easiest or simplest way to solve the problem without distracting others or causing more difficulty for the individual, teachers, or other students.

Consult: After the needs are figured out, ask other people about the AT devices they use. Don’t be afraid to seek out professionals for advice.  Check out websites, blogs, and forums for advice on different devices.  Ask for examples of how the device helps, the limitations one might encounter, and pros and cons of the device.

Conclude:  Once a decision has been made about what is appropriate and what will meet the needs, it then is necessary to purchase, make, or obtain the AT and begin using it.  When we make a decision on AT devices, we must keep in mind that the needs may change, a person’s ability may outgrow the device, or that we might need to reevaluate.

Building in some flexibility when selecting the device can save time and money in the future.  For instance, if a person struggles to turn pages of a book, then an e-reader would be more appropriate.  However, if the person is unable to use a mouse and keyboard as well, then selecting a device that is internet capable may be a better option.  Before you purchase the device, try it out.  Each state has a National Assistive Technology center. Often, families can try out devices or other AT items prior to purchasing.  Below are a few links:

History of Quality Indicators for Assistive Tehcnology

State Tech ACT Projects

Early Childhood Technical Assistance Center

National Center for Technology Innovation

Things to remember about Assistive Technology:

  • AT levels the playing field by providing access
  • Each person requires different types of AT
  • One size does not fit all
  • AT does not have to be expensive
  • AT can change based on the needs, development, and milestones reached by the individual
  • AT is protected by law

“Working Together with Military Families of Individuals with DisAbilities!”

 

Q & A Transportation and Private Schools

I have enrolled my child in a private school in our town.

Q: She is also receiving special education services at our local district. We have been discussing if the District is responsible for providing transportation from my home to the private school. What are your thoughts?

A: We have Washington Administrative Codes (WAC 392-172A-04045: http://apps.leg.wa.gov/WAC/default.aspx?cite=392-172A-04045) that address that particular issue.

If it is necessary for the student to benefit from or participate in the services provided by a parentally placed private school, students eligible for special education services must be provided transportation.

This includes:

From the student’s private school or the student’s home to a site OTHER than the private school.

From the district school to the private school or the students’ home, depending on the time of the service.  For instance, if the student received the special education service at the end of the school day then transportation would be provided home.

Districts are not required to provide transportation from the student’s home to the private school.

Hope this helps!

 

Q&A – Should the Whole Team be Present for an IEP?

Amending the Individualized Education Program (IEP)

Q: My son’s special education teacher informed me she wants to have a meeting to amend his Individualized Education Program (IEP). It is not time for his annual review, but he has met some goals and objectives and she would like to change them. Do you think this is a good idea, and can we do this without the whole team?

A: Absolutely!  If you and the district agree with the changes and write an amendment that would be perfectly acceptable.  Again, both parties must agree and the full IEP Team should be informed – even if they’re not present.  Make sure you get a copy for your records and congratulations on your son’s progress.

 

Hospital to Home

Without a doubt, one of the most stressful situations you can face as a parent is the hospitalization of your child.

Whether it is a planned stay, like a surgery, or an unplanned event, parents are bombarded with a huge number of shifts in their day-to-day life and priorities. Parents are also expected to step in and provide a lot of the care a child receives in the hospital once they are back home and that can be extremely overwhelming. While the purpose of this article is for families with a child who is medically fragile or has a life-threatening diagnosis, it is also meant to offer ideas for the unexpected and planned hospitalizations that can occur in all our families. Hospitalization and Emergency Room (ER) visits for many families with a child who is medically fragile or has life-threatening diagnosis is an ever-present possibility. The hope is to provide some tool kit examples and some ideas to ease the transition back home.

As a parent who has spent a lot of time in ERs, Intensive care units, and the medical floor during hospital stays, I have found that I was better prepared for what was going on and the transition back home when I asked questions and shared what home was like with the doctors, nurses, and therapists. I also found that the hospital social workers were my best friends when it came to asking about support for me as a parent. Even before you talk with the discharge planner check in with the social workers. They often have information about support groups, outside therapists/home help, vouchers, and financial supports that you don’t have the time to think about while your child is hospitalized.

Building relationships and the supports for you with the staff caring for your child can help ease some of the overwhelming confusion.  Especially when there is an extended medical emergency or complex surgery with a long recovery. Keep a small notebook to write down and track what doctors and nurses do, and record the answers to your questions when you ask them. If you have a smart phone, there are multiple apps for this on both iPhone and android platforms. Most important of all is making sure you take time for you and self-care.  This is often the hardest part and frequently we know it’s what we need to do and focus on other pressing priorities.  Remember, when you take time to renew it helps you be there for your family. While your child is hospitalized, the nurses are there to take care of them, so find ways to re-charge. Take breaks and find quiet time for yourself because once you get back home you are often the nurse and parent.

Vital links for your family and your child:

This first link is from the Agency for Healthcare Research and Quality (AHRQ) and takes you to a website that gives some good basic information and links to checklists. After clicking on the link below this text, go to the middle of the page. There will be a link to the “Be Prepared to Go Home Checklist and Booklet” is a good general tool to use. https://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy4/index.html

The second link for a Neonatal Intensive Care Unit (NICU) babies or Pediatric Intensive Care Unit (PICU) babies and is really targeted to supporting parents of infants. https://www.ahrq.gov/professionals/systems/hospital/nicu_toolkit/nicu-packet.html

The last link is a great way for families of children with complex medical needs to prepare ahead of time just in case. This link is for the Family Voices collaborative care notebook template that has places for all of the information that goes with the care of your child. This tool can be used to provide information to the hospital and ER. Some families have used the child sheets or the emergency information sheets as a one pager to take with them to the ER or for extended hospitalization. This sheet provides the multiple doctors and staff that you see with consistent accurate information. There are also schedules that a child might need in their care and they can be used to record care needs in the home. http://www.fv-ncfpp.org/files/5813/0721/3621/Care_Notebook_-_entry_enabled1_reduced.pdf

These tools have been a great help in supporting my family with multiple hospitalizations and it is my hope they will be useful for you too!

 

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

Developmental Screening (Birth to Three and Medically needed developmental screening)

What is Developmental Screening?

Developmental screening is the practice of systematically looking for and monitoring signs that a young child may be delayed in one or more areas of development. Screening is not meant to establish a diagnosis for the child, but rather to help professionals and families determine whether more in-depth assessment is the next step. By using a high-quality screening tool, professionals can screen children for delays accurately and cost-effectively.

Think about your child’s first months. The medical professionals set up regular “Well-child” appointments just to monitor how your child is doing.  These “Well-child” visits allow doctors and nurses to have regular contact with children to keep track of the child’s health and development through periodic developmental screening. Developmental screening is a simple process that can have both informal and formal assessments. When using a tool that is more formal in nature, the short test can tell if a child is learning basic skills when he or she should, or if there are delays. Developmental screening can be done by other professionals in health care, community, or school settings.

We have heard many times over the years that a child’s greatest window for development is in the first five years of life. Eighty-five percent of the brain’s development occurs before age three, making the first years of life critical to a child’s future success. The research shows that early intervention greatly improves a child’s developmental and social skills. Early intervention services help children from birth through 3 years of ages. Services usually include the support of an early educator who works with the family, as well as therapy (if identified as a need) to help the child talk, walk, and interact with others.

It’s not uncommon for parents to become concerned when their little one doesn’t seem to be developing within the normal schedule of “baby” milestones. You may worry that he hasn’t rolled over yet, or that he isn’t doing what the neighbor’s child, who is about the same age is doing. There may be concerns about your baby sitting up or beginning to verbalize words and sounds.

While it’s true that children develop differently, at their own pace, and that the range of what’s “normal” development is quite broad, it’s hard not to worry and wonder. If you think that your child is not developing at the same pace or in the same way as most children his or her age, it is often a good idea to talk to your child’s pediatrician. Explain your concerns. Tell the doctor what you have observed with your child. The doctor or other professionals might ask you some questions they may also talk and play with your child to see how he or she plays, learns, speaks, behaves, and moves. A delay in any of these areas could be a sign of a problem.

You can also get in touch with your community’s lead agency for birth-to-three services, and ask for an evaluation to see if there are possible delays. Based on referrals from the Doctor and the evaluation provided by the early intervention team, your child may be eligible for early intervention services, which will be developed with you and will address your child’s special needs.

Screening is a simple process that can identify infants and young children who may be at risk for health, developmental, or social/emotional problems. It identifies children who may need a health assessment, diagnostic assessment, or educational evaluation. “Screening” means using a standardized instrument. This could include a parent questionnaire, observational process, or other form of measurement that has been validated by research to learn more about the child’s development. Using a standardized instrument is much more effective for identifying real concerns or delays than just using professional judgment or informal questions about the child’s development.

The screening process provides an opportunity for young children and their families to access a wide variety of services and early childhood programs. It also supports the parents’ understanding of their child’s health, development, and learning.

The developmental screening and evaluations can lead to the involvement of a Family Resource Coordinator who will walk with the family through those first three years. They do a family needs assessment, if the family wishes to have one done. This helps identify areas the needs and priorities of the child’s family. Family-directed services are meant to help family members understand the special needs of their child and how to enhance the child’s development.

The need to provide early intervention is significant. Many children with developmental delays are not being identified as early as possible. This can result in these children waiting to get the help they need to do well in social and educational settings until they are in a school or pre-school setting. Research has shown that in nearly one in six Washington kids has a developmental delay, but only 30% of these children are identified before starting kindergarten, when early support services are most effective. Additionally, research has also identified that in the United States, about 13% of children 3 to 17 years of age have developmental or behavioral disabilities. These can include autism, intellectual disabilities, and attention-deficit/hyperactivity disorder. Additionally, there are children who have delays in language, social skills, or other areas that affect school readiness. This same research found that many children with developmental disabilities weren’t identified before age 10. These types of delays have significant implications since by that age there are significant delays that might have been addressed earlier and provided opportunities for services and support that was missed.

Because of the rapid growth in a child’s first three years of life, early support and monitoring of child development is essential for these children to reach their full academic potential as well as social and personal success. In all cases, kids will experience greater success academically, socially, and personally if delays are caught early and kids and families get the support they need. Free developmental screening using the Ages and Stages Questionnaire-3 screening tool is one of the best ways to get more awareness of what can help your child. In addition to the Ages and Stages survey a terrific tool and support network has been established called “Within Reach”. The “WithinReach” website is committed to supporting optimal child development of all Washington families. Through the “WithinReach” Family Health Hotlineand Child Development program, families can access free developmental screening, connections to early learning and family support and referrals to early intervention for developmental delays.

If you would like a free developmental screening for your child or have concerns about your child’s development, it is as easy as calling their Family Health Hotline (800) 322-2588 or visiting their website at www.ParentHelp123.org.

Remember that as important as Developmental screening is as a part of early intervention, can go also be important in assuring that the needs of children of older ages also find success and resources. Developmental screening for older youth can include areas of the individual’s development in mental health, social and emotional needs, and communication needs, just to name a few. Developmental screening will help assure that the needs of the individual whether an infant or an older child, can be met, and how those needs can be met. As parents and family members we have a responsibility to help our children thrive and developmental screening can help us know which path to follow to make that happen.

Resources for this article:

http://www.cdc.gov/ncbddd/childdevelopment/screening.html

http://www.parentcenterhub.org/repository/ei-overview/

http://www.health.state.mn.us/divs/cfh/topic/devscreening/screening.cfm

http://agesandstages.com/research-results/why-screening-matters/developmental-screening/

http://www.cdc.gov/ncbddd/autism/index.htm

http://www.cdc.gov/ncbddd/actearly/pdf/parents_pdfs/intellectualdisability.pdf

http://www.cdc.gov/ncbddd/autism/index.htm

http://agesandstages.com/

http://www.withinreachwa.org/what-we-do/healthy-families/child-development/

http://www.cdc.gov/ncbddd/childdevelopment/screening.html#references