Person-centered planning is all about making decisions that focus on you as a unique individual. It’s about listening to what you want and need, and then working together to make those things happen.
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Who we are looking for:
Individuals with disabilities who are inspired to lead and innovate.
Motivated persons interested in personal and community development.
Aspiring entrepreneurs looking to create a significant impact through their own business.
You’re in Charge: With person-centered planning, you get to take the lead in making choices about your life. It’s about giving you the power to decide what’s best for you.
Tailored Support: Instead of fitting you into a standard plan, person-centered planning creates a plan just for you. It’s like having a customized roadmap to help you reach your goals.
Looking at Everything: This approach looks at all parts of your life, not just one aspect. It helps make sure you get the support you need for everything that matters to you.
Feeling Good: When you’re in control and getting the support you need, it can make life more enjoyable and fulfilling. Person-centered planning helps you feel good about yourself and your future.
Working Together: It’s not just about you making decisions alone. Person-centered planning brings together everyone who cares about you to help support you on your journey.
What Makes it Special?
You’re the Focus: Person-centered planning is all about you. It respects your thoughts, feelings, and dreams, putting you at the center of everything.
It Adapts: Life changes, and so do your needs. Person-centered planning is flexible and can change and grow with you as you move forward.
Thinking Long-Term: It’s not just about today but your future, too. Person-centered planning helps you set goals for the long haul and supports you in reaching them.
Being a Part of Things: This approach encourages you to be involved in your community and pursue things that matter to you, like school, hobbies, and friendships.
Feeling Strong: Person-centered planning helps you become more confident and independent. It’s about empowering you to speak up for yourself and make choices that shape your life.
If you’re interested in learning more about person-centered planning:
For Teachers: If you’re a teacher and would like assistance from a PAVE staff member to help your students develop a plan, please contact us for pricing details.
For Parents: If you’re a parent who believes your child could benefit from a person-centered plan, inform your child’s teacher to contact us.
Legal and informative documents parents may want to create (wills, powers of attorney, letter of intent)
Financial planning, including options which do not affect your child’s benefits.
Supporting and protecting your minor child after your death or when you are unable to care for them.
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Thinking about the future when you will no longer be available to help your child because of death or a condition where you cannot participate in their care can be emotionally difficult. On top of that, this planning process is full of important decisions with significant impacts on your child’s future. To prevent being overwhelmed, it may help to review the entire article, and then tackle the tasks and steps needed to create a plan.
Legal Planning. You will need:
A will:If you die and either don’t have a will or don’t specify a guardian in your will, the courts will appoint someone, and it won’t necessarily be a family member. It could be a complete stranger. A will usually includes almost all your instructions for how you want your child to be cared for when you die.
A Letter of intent: It expresses your wishes for your child which are not included in the will. It has no legal standing, but acts as a guide for guardians, Power of Attorney agents, and trustees. It can be provided to your selected guardians and a copy can be saved with the lawyers who helped you set up your will and Powers of Attorney.
Powers of Attorney (POAs): Create agents, people who can legally act on behalf of your child for financial, health care and other life areas. They are selected by you, for after your death or when you are temporarily or permanently not capable of caring for your child. These agents do not have to be the same people you select as guardians. These are legal documents best prepared with the help of a lawyer and must be notarized.
Wills:
Who will be your minor child’s guardian? What will they need to know about your child? How will your child be financially supported while a minor? It’s recommended that parents select someone different than the guardians to manage their child’s finances. 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. List each child individually when naming a guardian, and list all your minor children. Probate courts will not assume you want the same guardian for all your children unless you list them that way and might appoint a separate guardian for unlisted children!
For ex: “I/We name Harold and Maude Green as guardians for our minor children Georgia Brown, Michael Brown, and Theodore Brown”.
Important: Do not directly leave your child with disabilities any money or assets in your will. Instead, have that child’s share of their inheritance pass to a Special Needs Trust and/or ABLE Account (as described below). Note that in this situation, it’s good to have a lawyer draw up the will to make sure that the inheritance does not impact your child’s current or future benefits, such as Social Security programs or Medicaid.
Financial Planning
Government Benefits: For the present time, and for your child’s future
Supplemental Security Income (SSI) for your child at any age. The SSI program makes cash assistance payments to aged, blind, and disabled persons (including children) who have limited income and resources. Many states pay a supplemental benefit to persons in addition to their Federal benefits.
People who qualify for SSI may, in some states, qualify for Medicaid health insurance, which is either free or low-cost.
Social Security Disability Insurance (SSDI) program for disabled and blind persons. The amount of the benefit is based on your child’s contributions to Social Security OR based on the parents’ earnings. Your child must meet Social Security criteria for disability.
Payments from either program are often not enough to pay for everything your child may need or want, and any money or assets in your child’s name may cause their Social Security benefits, Medicaid coverage, and other benefit programs (supported housing, SNAP /food stamps, etc.) to be cut back or eliminated.
Funding your child’s future directly
Special Needs Trusts andABLE accounts are ways to provide for your child financially that do not reduce their government benefits. They differ in many ways, with their own pros and cons. You might wish to have both an SNT and an ABLE account based on your family’s circumstances.
An ABLE account is a tax-advantaged savings account that can fund disability expenses. Currently, the beneficiary of the account (the person with a disability) must have acquired the disability before age 26, and this age limit will increase to before age 46 on January 1, 2026. The beneficiary of the account owns the funds. Interest (income) earned by the funds will not be taxed. Anyone can contribute to the account (the individual with disabilities, their family members, friends, or a Special Needs Trust).
The funds in the ABLE account are generally NOT COUNTED as income or assets against an individual’s eligibility for SSI, Medicaid, and other programs with income and asset limits, such as federal student aid, HUD housing programs, and SNAP (food stamp) benefits.
Special Needs Trust (SNT): A trust is a legal “tool” for managing funds, and Special Needs Trusts are set up so that the beneficiary of the trust, in this case your child with disabilities, can have the funds used on their behalf. Money in the SNT is not counted against income limits for government benefit programs. 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.
Government benefits will cover most of the basic needs while monies from the trust can pay for your child’s wants. Only a qualified attorney should set up the trust. If it is done incorrectly, your child’s benefits could be at risk.
There are several types of SNTs. The one most commonly set up by parents or guardians for a child is called a third-party special needs trust, which means that the funds in the trust are from someone other than the child. Military parents may designate Survivor Benefit Plan payments to an adult dependent child with disabilities, but only through a first party trust.
NOTE: Unlike ABLE accounts, which were set up according to federal law, there is no “official” source of information on Special Needs Trusts. Many elder and disability law practices will have information on their websites about SNTs. Additional information from disability organizations can be found at:
ARC of the United States: Type “Special Needs Trust” in the search bar to find a large number of articles on the topic, not only for individuals with developmental disabilities.
Military OneSource: Type “Special Needs Trust” into the search bar for military-specific information on SNTs.
It’s important to know that a professional should help you create the SNT. Consult with an attorney with expertise in elder and disability law. When naming trustees, it’s important to not only name yourselves, but to name backup (“secondary”) trustees to cover situations when you are not able to act as trustees. Setting up secondary trustees is separate from setting up agents using a Power of Attorney (POA). The authority of an agent under a POA may not be accepted by the financial or legal organization where the trust funds are held. You may choose to use the same individuals you selected for your financial POA, or different people.
Special Needs Alliance “is a national alliance of attorneys for special needs planning.” They have a directory of attorneys which currently lists two attorneys in Washington State who are members of that organization.
Legal work can be expensive! Here are some resources to seek out free or low-cost help and referrals:
WashingtonLawHelp.org: This website has articles on topics about future planning, such as wills, guardianship of children and adults, alternatives to guardianship, Powers of Attorney, and information for non-parents raising children along with many others
CLEAR intake hotline: “CLEAR is the statewide intake line for free and low-cost civil legal aid in Washington. Call 1 (888) 201-1014 or use the online intake form on the website. Seniors (people age 60 and over) can access intake by calling CLEAR*Sr at 1 (888) 387-7111. Veterans may dial 1 (855) 657-8387”.
ABA Home Front: If you are military, and you do not wish to use your Judge Attorney General (JAG) or they do not have experience with Special Needs Trusts or other future planning when your child has a disability, the American Bar Association has several programs, including free or low-cost options, to locate an attorney or program with a focus on military families. Veterans can get free legal answers on this website, too!
This article provides examples and simple guidance about how to be more strategic in parenting a child who struggles with behavior.
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.
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Holidays can be challenging for families impacted by disability, trauma, grief, economic struggles, and other stressors. The holiday season 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,” Schmitz says. “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.”
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:
Demonstrate/model the wanted behavior
Provide many opportunities for practice
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 —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 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:
The Comprehensive, Integrated Three-Tiered Model of Prevention (ci3t.org) provides videos and other Related Resources for Families in English and Spanish (scroll down the page to find the Resources for Families).
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
Supplemental Security Income (SSI) is a monthly financial payment made to persons meeting specific eligibility requirements defined by the Social Security Administration (SSA).
A person may be eligible for SSI if they are aged, blind or disabled; have limited income and resources; and are a citizen or resident of the United States.
SSI is different from Social Security Disability Insurance (SSDI), which is aninsurance that workers earn by paying into taxes on their earnings.
There is a special rule that allows dependent children of military families serving on overseas assignments to begin or continue receiving SSI benefits while outside of the United States.
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What Is SSI?
Supplemental Security Income (SSI) is a monthly financial benefit from the Social Security Administration (SSA) to people with limited income and resources who are age 65 or older, blind or disabled. Blind or disabled children, as well as adults, can get SSI.
Eligibility Requirements
To be eligible for SSI, a person must meet specific eligibility criteria, including:
SSA definitions of aged, blind, or disabled
Having limited income and resources
Citizenship or residency status
Aged Determination
A person who is 65 years of age or older may qualify for SSI as “aged” if they also meet the financial determination.
Blind or Disabled Determination
SSA defines “blind” as seeing at a level of 20/200 or less in the better eye with glasses or contacts, or having a limited field of vision that can only see things at within a 20-degree angle or less in the better eye. A person with a visual impairment that does not meet the criteria for blindness may still qualify for SSI based on the disability.
An adult or child may qualify for SSI as “disabled” if they have a physical or mental impairment that can be medically diagnosed through clinical and laboratory diagnostic techniques for anatomical, physiological, and psychological irregularities. The condition must cause marked and severe functional limitations, including emotional or learning challenges, that have lasted or are supposed to last for at least 12 months without interruption.
A person aged 18 or older must qualify as an adult, which includes proving they are unable to do substantial gainful activity. Two (2) months before a child receiving SSI benefits turns 18, SSA will conduct a disability redetermination to determine whether the child meets the adult criteria to continue receiving SSI payments.
Eligibility for disability is determined by a team that includes a disability examiner and a medical or psychological consultant at a state agency known as the Disability Determination Service (DDS). The team will review medical and financial documents, and determine eligibility based on the documents provided or request more documents be provided.
It is necessary to complete both disability and financial determinations when assessing eligibility. This is because SSI eligibility determination may be used in other programs within your state.
Limited Income and Resources
SSI is a needs-based program. In order to receive SSI, the applicant must have limited income and resources.
If the applicant has too much income, their application will be denied, and they will be ineligible for SSI payments. A child does not earn income so part of their parent’s income will be attributed to the child. Different sources of income are treated differently and some have greater exclusions than others. When an adult applies on behalf of a child, the parent or guardian’s income is considered “deemed” income to the child. SSA will prorate the adult’s income among the family members to determine the amount applicable to the child.
If you received SSI in another state, be aware that some states have a higher income limit that allows an individual to receive SSI benefits despite being over the federally established income limits. Washington is not a state with a higher income limit and applications submitted in Washington state must meet the federal income limits.
Resources include both money (e.g., cash, bank accounts, Certificates of Deposit, stocks and bonds, investment accounts, life insurance) and property (e.g. vehicles, houses, real estate) that could be sold or converted to cash to pay for food or shelter. There are limits for how much an applicant may have in resources and maintain eligibility for SSI:
An individual may have up to $2,000
A couple may have up to $3,000
When applying on behalf of a child, an adult may have an additional $2,000 in resources and a portion of the adult’s resources may be applied to the child
Some resources are excluded from the eligibility determination, including:
Properly distributed funds from a special needs trust (SNT) on behalf of the individual with a disability
Citizenship or Residency Status
SSI is only available to U.S. citizens and nations residing in the United States or the Northern Mariana Islands, and qualifying non-citizens with certain alien classifications granted by the Department of Homeland Security (DHS). SSI benefits will stop if a person leaves the U.S. for a full calendar month or at least thirty (30) consecutive days, with the exception of dependent children of active duty servicemembers serving overseas.
Is SSI The Same As SSDI?
Supplemental Security Income (SSI) is not the same thing as Social Security Disability Insurance (SSDI). SSI is a needs-based public assistance program for children and adults. The eligibility criteria include limited income and resources. SSI payments come from the general funds of the U.S. Treasury from tax revenues.
SSDI is an insurance that workers earn by paying into the Social Security through taxes on their work earnings. It is not affected by income or resources. In order to receive SSDI, the person must have worked and paid from their earnings into the Social Security trust funds in the U.S. Treasury.
How Do I Apply For SSI?
Family to Family Health Information Center (F2FHIC), a program of PAVE, provides technical assistance, information, and training to families of children, youth, and adults with special healthcare needs. The F2F website contains invaluable information and resources to help family members, self-advocates, and professionals navigate complex health systems and public benefits, including SSI. After reviewing F2F’s article about how to apply for SSI, if you have questions and would like to speak with an F2F team member, please submit a Help Request.
Special Consideration For Military Families Overseas
A special rule allows dependent children of military families serving on overseas assignments to begin or continue receiving SSI benefits while outside of the United States. The child must be:
is a U.S. citizen
living with a parent who is a member of the U.S. Armed Forces assigned to permanent duty ashore outside the United States
listed in the Command sponsorship orders.
If the child is receiving SSI benefits before moving overseas with the active duty service member, the benefits will continue based on the rate of the state in which they applied. If the child is born overseas or becomes eligible for SSI while overseas, you can apply for SSI by contacting the Federal Benefits Unit at the nearest U.S. Embassy or Consular Office, or by applying online. For additional support with your application, call SSA at 1-800-772-1213 (TTY 1-800-325-0778).
Once the child turns 18, they will no longer be eligible for SSI until they have been living within the United States for thirty (30) consecutive days and will be subject to the disability redetermination process.
When relocating on military orders overseas, you must report:
the servicemember’s expected report date to the duty station overseas
the child’s expected date of arrival at the overseas location
the mailing address at your new duty station
changes in military allowances at your new duty station
Everyone has moments when they hear something and pause to wonder, Is that true? This article and its companion videos describe some special education topics that may be misunderstood. Included is an explanation of what is fact.
Topics relate to special education eligibility, placement, support personnel, bullying, student discipline, and more.
Read on to see if there are things you haven’t quite understood about your student’s rights or educational services. PAVE hopes to empower families with information to make sure students with disabilities have their best chance for an appropriate and meaningful education.
The final myth described in this article is that PAVE provides advocacy on behalf of families—we don’t! But we can help you learn to be your child’s most important advocate. Click Get Help at wapave.org to request 1:1 assistance.
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Everyone has moments when they hear something and pause to wonder, Is that true?
Parents/caregivers in meetings with their child’s school can feel particularly confused when something doesn’t sound right. They might wonder whether it’s appropriate to question school authorities. They might not understand all the words being spoken. Fear of not knowing something can make it uncomfortable to speak up.
At PAVE, we encourage families to ask questions and make sure they understand the words school staff use. Ask for important answers in writing, and plan to research explanations that are confusing.
For example, if you ask for something and the school says no because of a law or policy, ask for a written copy of the relevant parts of that law or policy. Try to understand the school’s reason for saying no. Write down what you understand and send a reflective email to school staff to make sure you understand their position correctly.
Having everything in writing is important, especially if filing a complaint is a possible next step.
This article describes myths and misunderstandings some people might experience when navigating school-based services for students with disabilities. These topics apply to students with Individualized Education Programs (IEPs), students with Section 504 Plans, and students with possible disability conditions impacting their educational access.
Parent Participation
MYTH: The school must hold a meeting without a parent if the parent is unavailable before an annual renewal deadline because the student’s IEP, 504 Plan, or eligibility will expire or lapse. FACT: Parent participation is a higher priority than deadlines. Schools are required to accommodate parents/caregivers to ensure their attendance and participation at meetings where their child’s special education services are discussed. Those rights are affirmed in a court decision from 2013: Doug C. Versus Hawaii. If a meeting is delayed because a family member is temporarily unavailable because of illness, work, travel, or something else, services continue uninterrupted until the meeting. PAVE provies an article: Parent Participation in Special Education Process is a Priority Under Federal Law.
Evaluation
MYTH: The school is not required to evaluate a student who gets passing grades. FACT: If there is a known or suspected disability condition that may be significantly impacting a student’s access to any part of their education—academic, social-emotional, behavioral, or something else—then the school district is responsible under Child Find to evaluate the student to determine eligibility for services and support. Child Find is an aspect of federal law, the Individuals with Disabilities Education Act (IDEA).
MYTH: Section 504 doesn’t apply for a student without a plan or program. FACT: Section 504, which is part of the federal Rehabilitation Act of 1973, includes protections for students with suspected or known disability conditions that warrant evaluation. For example, if a student consistently misses school for reasons that may be connected to disability, the school may be accountable under the civil rights protections of Section 504 if an evaluation referral isn’t initiated.
MYTH: Section 504 eligibility does not involve an evaluation. FACT: An evaluation process is required to determine whether a student has a disability condition impacting a major life activity. That evaluation process may include a review of grades, test scores, attendance, health room visits, parent and student input, teacher observations, medical or psychological evaluations, special education data, medical information, and more. If the student meets criteria, evaluation documents are used to support the design of accommodations and other individualized supports to ensure equity. The state provides a family-friendly handout, downloadable in multiple languages, to describe 504 eligibility, evaluation process, plan development, and civil rights complaint options.
Medical Diagnosis
MYTH: A student cannot be identified as eligible for services under the autism category unless they have a medical diagnosis of autism. FACT: If there is a suspected disability condition and reason to believe there is a significant educational impact, the school is responsible under Child Find to evaluate the student to determine eligibility for services. Schools have evaluation tools to determine characteristics of autism, its possible educational impacts, and student needs. Medical information might help an IEP team design interventions, but families are not required to share medical information with the school, a medical diagnosis is not required, and doctors may not “prescribe” an IEP.
Placement
MYTH: Special Education is a location within the school. FACT:Special Education is a Service, Not a Place, and PAVE provides an article by that title to further explain a student’s right to educational services in general education—the Least Restrictive Environment (LRE)—to the maximum extent appropriate.
MYTH: The school district is in charge of placement decisions. FACT: The IEP team determines a student’s placement. If placement in general education, with support, is not meeting the student’s needs, the IEP team is responsible to locate or design a placement that best supports the student in accessing their Free Appropriate Public Education (FAPE). Placement might be general education, a segregated classroom setting where special education services are provided, day treatment, alternative learning environment, residential, home-based, something else, or a combination of any of these options. Once an IEP team designs a placement, the school district has some leverage in choosing a location. For example, if an elementary-age student who is struggling to read needs individualized services from a reading specialist, the district might bus them to a school in another neighborhood where a specially trained teacher provides reading instruction in a smaller classroom. The district doesn’t have to offer every placement or service within every building, but it does need to serve the IEP as written by the IEP team.
MYTH: Preschool IEPs are not required to serve students in the Least Restrictive Environment to the maximum extent appropriate. FACT: An IEP is required to serve a student with a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE), to the maximum extent appropriate, regardless of age or grade level. WAC 392-172A-02050 provides specific language about state requirements for LRE, including for preschool students.
Adult Aids at School
MYTH: A 1:1 creates a “restrictive environment” for a special education student. FACT: Least Restrictive Environment (LRE) refers to placement. A helper is an aid, not a placement. Supplementary aids and services, including 1:1 support from an adult staff member, may support access to the Least Restrictive Environment (LRE) for some students. If having a 1:1 enables a student to appropriately access learning in the general education setting, then that support is provided to ensure FAPE (Free Appropriate Public Education). FAPE within LRE is required by federal special education law, the Individuals with Disabilities Education Act (IDEA).
MYTH: Support personnel should regularly rotate in their roles to ensure a student does not become “dependent” on specific individuals or relationships. FACT: Healthy interpersonal relationships enable humans of any age to feel safe and secure. Because of the way our brains work, a person doesn’t learn well when a fight/flight nervous system response is activated. Connecting to trusted adults and receiving consistent help from safe, supportive people enhances learning. PAVE provides a collection of articles about Social Emotional Learning (SEL) and Washington State’s SEL Standards.
Section 504
MYTH: A 504 Plan is a watered down IEP. FACT: Section 504 is part of a civil rights law called the Rehabilitation Act, passed by the US Congress in 1973. The anti-discrimination protections of Section 504 apply to any person identified as having a disability condition that impacts their life in a significant way. Public agencies, including schools, are responsible to provide individualized accommodations and support to enable the person with a disability to access the service, program, or building in a way that affords them an equitable chance to benefit from the opportunity. A 504 Plan at school ensures the right to a Free Appropriate Public Education (FAPE). Section 504 FAPE rights are upheld by the US Department of Education’s Office for Civil Rights. PAVE provides a video series: Student Rights, IEP, Section 504 and More.
MYTH: Section 504 doesn’t apply to a student with an IEP FACT: Section 504 protections apply to students with IEPs and those with Section 504 Plans. The civil rights protections of Section 504 are threaded throughout the IEP, especially within sections that describe accommodations and modifications. Section 504 includes specific provisions to ensure students are not discriminated against within student discipline, by unmitigated bullying, or through denial of support that is needed for access to what non-disabled students access without support. All aspects of school are protected, including athletic events, field trips, enrichment activities, specialized learning academies, and more—everything the school is offering to all students. PAVE provides a comprehensive article about Section 504 and its protections for all students with disabilities.
MYTH: If the student has found ways to cope with their disability, they don’t need support. FACT: Section 504 forbids schools from using “mitigating measures” to justify denial of evaluation or support. A mitigating measure is a coping mechanism—for example, a deaf student who reads lips or a student with an attention deficit whose symptoms are improved by medication. PAVE’s article about Section 504 provides more detail about mitigating measures.
Bullying
MYTH: The best way to help a student with a disability who is being bullied is to remove them from the bully’s classroom. FACT: Section 504 protects a student with disabilities in their right to be protected from bullying. That means the school must stop the bullying and support the victim to feel safe again. Schools may not punish or disadvantage the victim. OCR says: “Any remedy should not burden the student who has been bullied.” PAVE provides a video: Bullying at School: Key Points for Families and Students with Disabilities.
MYTH: An informal conversation is the best way to address bullying. FACT: The best way to hold a school accountable to stop bullying and support the victim is to file a formal HIB Complaint. HIB stands for Harassment, Intimidation, and Bullying. Washington State’s 2019 Legislature passed a law that requires school districts to write formal HIB policies and appoint a HIB Compliance Officer to spread awareness and uphold the laws. Families can contact their district’s HIB Compliance Officer for support with a complaint and to ensure student civil rights are upheld.
IEP Goals and Process
MYTH: An IEP provides education to a student with a disability. FACT: An IEP is not the student’s education. An IEP provides educational services to enable a student to access their education. IEP goals target areas of learning that need support in order for the student to move toward grade-level curriculum and learning standards. Included are services for academics, adaptive skills, social-emotional skills, behavior—all areas of learning that are impacted by disability.
MYTH: If an IEP team agrees to change something about a student’s services or placement, the team must submit that idea to the district for approval or denial. FACT: An IEP team has decision-making authority. The team is required to include a person knowledgeable about district resources (WAC 392-172A-03095) so decisions about program and placement can be made at the meeting. If a required IEP team member is not in attendance, the family participant must sign consent for the absence. The family can request a new meeting because a key team member, such as a district representative, is missing. PAVE provides more information and a Sample Letter to Request an IEP meeting.
Behavior and Discipline
MYTH: A Functional Behavioral Assessment (FBA) is used to figure out how to discipline a student more effectively. FACT: An FBA is an evaluation focused on behavior. It helps IEP teams understand the needs behind the student’s behavior. A Behavior Intervention Plan (BIP) is built from the FBA to provide positive behavioral supports, teach new or missing skills, and reduce the need for discipline. PAVE provides a video about the FBA/BIP process.
MYTH: A school isn’t responsible to track exclusionary discipline if a parent agrees to take the child home and no paperwork is filed when the school calls to report a behavior incident. FACT: “Off books” or informal suspensions count as exclusionary discipline for students with disabilities. If a student with a disability misses more than 10 cumulative days of school because of their behavior, the school is responsible to hold a manifestation determination meeting to decide whether the behaviors are directly connected to the disability and whether school staff are following the IEP and/or behavior plan. If services or placement need to change, this formal meeting is a key opportunity to make those changes. PAVE provides a video: Discipline and Disability Rights: What to do if Your Child is Being Sent Home.
Privacy
MYTH: A parent or provider who visits school to support or evaluate an individual student is violating the privacy rights of other students just by being there. FACT: Federal laws protect private medical or educational records. Visiting a classroom or other school space should not expose student records for inappropriate viewing. The Department of Education provides a website page called Protecting Student Privacy to share resources and technical assistance on topics related to the Family Educational Rights and Privacy Act (FERPA). The confidentiality of medical records is protected by the Health Insurance Portability and Accountability Act (HIPAA). Understanding HIPAA and FERPA can help parents /caregivers ask their school for documented explanations whenever these laws are cited as reasons for a request being denied.
Literacy
MYTH: Schools cannot provide individualized instruction in reading through a student’s IEP unless the student is diagnosed by a medical provider as having dyslexia. FACT: No medical diagnosis is needed for a school to evaluate a student for any suspected disability that may impact access to learning and school. An educational evaluation might show that a student has a Specific Learning Disability in reading, with characteristics of dyslexia. When a disability that impacts education is identified through evaluation, the school is responsible to provide services to meet the identified needs and enable appropriate progress. PAVE provides an article: Dyslexia Screening and Interventions: State Requirements and Resources and a video: Supporting Literacy for Students with Learning Disabilities.
Graduation
MYTH: The school has to withhold credits for a student to receive services beyond a traditional senior year. FACT: Credits do not need to be withheld, and a student doesn’t automatically earn a diploma by reaching the required number of credits. The IEP team determines the target graduation date for a student receiving services through an IEP and how transition programming for a student ages 18-21 might support learning and life planning. Receiving the required number of credits is only part of what a student needs to earn a diploma, and the IEP team individualizes a plan for the student with a disability to earn their diploma within the state’s options for graduation pathways. PAVE provides a Toolkit for life after high school planning.
Private School and Home School
MYTH: Public schools do not have to do anything for students with disabilities who are home schooled or enrolled in private schools by parent choice. FACT:Child Find applies to all students with known or suspected disabilities who live within a district’s boundaries, including those who are home schooled or enrolled in private schools. Child Find means the public district is responsible to seek out and evaluate all students with known or suspected disabilities. If the student is found eligible for services, parents/caregivers can choose to enroll the student in the public school to receive special education services, even if the primary educational setting is a private or home placement. If the student is fully educated in the private setting, by parent choice, the private school provides equitable services.
Parent Support from PAVE
MYTH: PAVE gives the best advice and advocates on behalf of families. FACT: PAVE does not give legal advice or provide advocacy. We support families in their work. Staff from our Parent Training and Information (PTI) program provide information and resources to empower family advocates. Our goal is to ensure that family advocates have knowledge, understand options, and possess tools they need to work with schools to ensure that student rights are upheld and the needs of students with disabilities are met. Click Get Help at wapave.org to request 1:1 assistance. Help us help you by reading your student’s educational documents and having those documents handy when you connect with us!
When family members and school staff meet to discuss a student’s services, certain things have to happen. One requirement is for the school to take notes and share those notes with the family within a reasonable amount of time (usually a few days) after the meeting. Those notes are formatted as a Prior Written Notice (PWN). This document is shared after a decision is made and prior to changes in a student’s program.
For example, if the IEP team meets and decides to change a student’s placement (where educational services are delivered), that decision is written down on the PWN. The PWN includes information about how the team made its decision and when the student will start receiving services in the new placement.
Parents can ask for their positions and reasons to be included in the PWN
During a meeting, family members can specifically ask for their position to be noted in the PWN. For example, if a school district staff member recommends changing a service and the parent does not agree to that change, the parent can say, “Please include in the Prior Written Notice that I do not agree to this change in service.” Family members can make sure their reasoning is included along with their position.
Family members also can request changes to the PWN after a meeting if they disagree with the wording or if their concerns or positions are left out. They might also provide something in writing and ask for it to be attached to the PWN for the record.
If the school takes an action that the family continues to disagree with, the family member might use a PWN among documents filed with a formal complaint. The PWN shows how disagreements were managed and documented through the IEP meeting process and whether family participation in decision-making was honored.
Washington State’s educational agency is the Office of Superintendent of Public Instruction (OSPI). On its website, OSPI guides families in what to expect in the PWN. According to OSPI, “The Prior Written Notice should document any disagreements with you and should clearly describe the reasons for this disagreement.”
PWN is an aspect of federal special education law, the Individuals with Disabilities Education Act (IDEA Sec.300.503(b)).
In accordance with IDEA, a PWN must include:
A description of the action proposed or refused by the school
An explanation of why the school proposes or refuses to take the action
A description of each evaluation procedure, assessment, record, or report the school used as a basis for their decision
A statement that the parents of a child with a disability have protection under the procedural safeguards and how the parents can obtain a copy of them
Sources for parents to contact to obtain assistance in understanding these provisions
A description of other options that the IEP Team considered and the reasons why those options were rejected
A description of other factors relevant to the school’s proposal or refusal
The school is required to provide PWN to the family when:
The school plans to evaluate your child
You’ve asked for your child to be evaluated and the school denies your request
The school wants to begin or change your child’s identification as a “child with a disability”
The school proposes or refuses a particular educational placement for your child
The school wants to change your child’s educational placement
The school wants to change aspects of the special education or related services that your child is receiving
The school refuses a request from you, as parents, with respect to the educational services your child is receiving
Like all formal educational documents, PWN must be provided in the family’s native language.
For more information about PWN and other special education requirements, refer to the Procedural Safeguards, available for download in multiple languages from OSPI’s website.
Parent participation in IEP process is a protected right for students with disabilities. If a student doesn’t have a family caregiver or legal guardian to advocate in their behalf, a surrogate parent is assigned to fill that role.
A surrogate parent is not paid and cannot be employed by the school system, or any other agency involved in the care or education of the child.
The provision for a surrogate parent is part of federal special education law, the Individuals with Disabilities Education Act (IDEA Section 300.519).
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If a student eligible for special education services does not have a family caregiver, adoptive parent, or other legal guardian fulfilling the role of parent, then a surrogate parent is assigned to ensure the student’s rights are protected. The surrogate parent fulfills the family caregiver role on a student’s Individualized Education Program (IEP) team and advocates to ensure the student’s needs are met.
A surrogate parent is an individual appointed by the public agency (usually a school district) responsible for the student’s special education services. Schools are responsible to assign a surrogate parent within 30 days after recognizing the need. Note that a child who is a ward of the state may be assigned a surrogate parent by the judge overseeing their case.
If a private individual, such as a neighbor or friend, has explicit written permission from the student’s parent or guardian to care for the student, a surrogate parent is not required.
A student 18-21 is responsible for their own educational decision-making unless they have a guardian to exercise their legal rights. A school district is responsible to assign a surrogate parent for a student declared legally incompetent or if an adult student with a disability asks for a surrogate parent.
A surrogate parent is required for a minor student when the parent cannot be identified or located or if parental rights have been terminated. A student’s parents are considered to be unknown if their identity cannot be determined from a thorough review of the student’s educational and other agency records.
A student’s parents are considered unavailable if they cannot be located through reasonable effort that includes documented telephone calls, letters, certified letters with return receipts, visits to the parents’ last known address, or if a court order has terminated parental rights. A parent is also considered unavailable if unable to participate in the student’s education due to distance or incarceration.
If a parent is too ill to participate at a meeting, either in person or by phone, that parent has the option of giving another individual written permission to act for them.
An uncooperative or uninvolved parent is not the same as an unavailable one. A surrogate parent is not assigned because parents choose not to participate in their child’s education.
A child identified as an unaccompanied homeless youth by the McKinney-Vento Homeless Assistance Act is an example of a student who would be assigned a surrogate parent to support them within the special education system. Children with surrogate parents might live in foster homes, nursing homes, public or private group homes, state hospitals, or correctional facilities.
In some cases, a state agency has guardianship of a student with a disability: That student requires the assignment of a surrogate parent.
Foster parents need to be formally appointed by the school as surrogate parents if they do not have legal guardianship. Relatives without formal kinship rights also can be designated as surrogate parents within the special education process.
A surrogate parent is not paid and cannot be employed by the school system, or any other agency involved in the care or education of the child. However, an unaccompanied homeless youth may be supported by appropriate staff from an emergency shelter, street outreach team, or other agency temporarily until a surrogate parent with no conflict of interest is appointed.
A surrogate parent must have knowledge and skills that ensure adequate representation of the student. A community volunteer, guardian ad litem, or other invested adult might serve as a surrogate parent. The surrogate parent must commit to understanding the student’s strengths and needs and how the educational system is structured to support the student’s services. Ideally, the surrogate parent lives near the student and is a match for providing culturally appropriate help in the student’s language.
The surrogate parent represents the student in all matters relating to special education identification, evaluation, and placement and works to ensure that the student receives a Free Appropriate Public Education (FAPE) from their school-based services.
The provision for a surrogate parent is part of federal special education law, the Individuals with Disabilities Education Act (IDEA Section 300.519).
Washington’s Office of Superintendent of Public Instruction (OSPI) includes some downloadable resources about the surrogate parent in its Special Education Resource Library.
PAVE is here to help all caregivers, including surrogate parents. For direct assistance, click Get Help to complete an online Help Request Form.
Parents and schools who want to learn more about special education process, rights and responsibilities can reach out to PAVE’s Parent Training and Information (PTI) staff for guidance and training. From PAVE’s home page, click Get Help!
This article contains information about a special-education bill proposed in 2019 that would have required SEPACs throughout the state. Currently the option to develop a SEPAC is available voluntarily.
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Parents, school staff and invested community members can collaborate to improve outcomes for students in special education by building together a Special Education Parent Advisory Council (SEPAC).
Any school district can establish a SEPAC, and anyone within the local district—including a parent—might start the work to get the group going. No legislation is required. Although a few states require districts to develop SEPACs, Washington State does not. SB 5532, which failed to pass in the 2019 legislative session, would have required Washington school districts to establish SEPACs.
Note: Conversations continue statewide about which aspects of the special-education bill may be revived in 2020. In addition to the SEPAC requirement, SB 5532 included provisions for safety-net funding for special education; requirements for teacher-preparation programs; service district advocacy; and requirements for the Division of Vocational Rehabilitation (DVR) to participate in transition meetings for students older than 16 with Individualized Education Programs (IEPs). A complete summary of the bill and information about its sponsorship and movement through the legislative process is available on the Washington State Legislature Website.
Once established, a local SEPAC is part of the local school district, not a private or independent group. It is not a Parent Teacher Organization (PTO); nor is it a parent support group. A local SEPAC addresses system-level challenges affecting students with disabilities and their families. A local SEPAC is parent-driven, and often parent-led, but there is an important role for school district staff and leaders. Ideally, membership is diverse and inclusive.
A parent center in New Jersey, in collaboration with the national Center for Parent Information and Resources (CPIR), provides a guidebook to help families and schools work together to build SEPACs. The Statewide Parent Advocacy Network (New Jersey SPAN), created the 67-page, downloadable Advocacy in Action guidebook with grant funding from the U.S. Department of Education. Debra Jennings, who serves as co-executive director of SPAN in addition to being director of CPIR, speaks informally about the guidebook and SEPAC development in a webinar available through Facebook.
According to Advocacy in Action, “Participation in a SEPAC offers the opportunity to raise questions, voice concerns, and provide direct input to school leadership and influence policy and program decisions. The great benefit of participating in a local SEPAC is that the individual needs of a child become part of ‘the big picture’ and can reach a broader community of children.”
A SEPAC is parent-driven, meaning that:
Parents determine priorities and activities.
Parents strategize to seek solutions on issues that matter to them, helping schools overcome challenges and make decisions related to special education programs and services.
The guidebook emphasizes that parent-driven does not mean that parents do all the work: “District leaders participate, provide information, background, data, and support.”
Washington has a statewide Special Education Advisory Council (SEAC), and PAVE participates on that council. Staff from PAVE’s Parent Training and Information (PTI) program are available to consult with parents and can provide information and resources to assist anyone who may wish to build a SEPAC. For example, PTI staff may provide a training in special education process, parent rights and responsibilities to families wanting to get more involved with their local school districts. PTI staff can help by providing tips for collaboration and developing a partnership with the district. Ideally, a SEPAC creates a sense of shared investment toward successful outcomes for students with disabilities.
From PAVE’s home page, click Get Help! to request assistance from PTI staff. Or call: 800-572-7368.
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:
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.
Over 30 million youth between the ages of 5-18 participate in youth sports every year.
Some of the most common hidden disabilities are Specific Learning Disabilities, Speech and Language, Attention Deficit Hyperactivity Disorder, and Autism Spectrum Disorder. Athletes with these disabilities can experience similar difficulties in understanding and developing a specific skill such as understanding a play for football or a routine for cheerleading/dance as they do in the classroom. Many coaches will have the opportunity to coach a child with one or more of these disabilities but will have no idea of the characteristics and learning strategies that are best suited for the child.
Tips to successful inclusion of athletes with hidden disabilities:
Routine is important, create an atmosphere where there is consistency. Conduct practices on the same days each week and begin and end practice at the same time.
To promote inclusion offer different skill levels during practice to help the development of each athlete (entry level, intermediate level, expert level).
Provide clear instructions/directions with an overview of how practice will occur.
The use of gestures and physical demonstration should accompany verbal instruction. Repeat and clarify instructions as needed. For example, when showing a football player how to hold a football, cue the athlete to hold one end of the ball in the bicep of the arm and the first two fingers hold the other end of the ball.
Break the specific skill into steps. For example, when teaching a basketball lay-up, first practice the dribble to the basket, second practice jumping off one foot with the basketball, and then practice shooting into the basket. Combine all three skills when the athlete is showing they are able to complete each skill.
Positive reinforcement is encouraged to keep athletes on tasks. Allow the athlete to earn a leadership role such as captain or co-captain.
Prevent challenging behaviors by redirecting the behavior. For example, if an athlete is interrupting or talking at the same time as the coach, have the athlete to help with the demonstration. This also encourages self-control.
Sports experiences can either have a positive or negative effect on a child. The interactions that a child has with their coach and teammates can affect their self-esteem. Creating a supportive environment that is respectful, inclusive, and celebrates the athlete’s development can enhance the child’s confidence and social skills.
When I was younger I never noticed anything wrong with my brother.
Sure, he was very hyper at times and I do remember taking him to speech therapy with my mom but nothing crossed my mind. I never realized my brother was different. One day at school, I was about 9 and my brother was 12, we were waiting in line outside of the lunchroom to go inside and eat breakfast. Nothing seemed wrong or out of the ordinary, until a group of kids in my brother’s grade walked over to us. They all surrounded us. Suddenly, they looked at my brother and the leader of the pack suddenly called him a “creep”. The group around us laughed. The same boy then started to call my brother other crude names. My brother looked puzzled and just kept saying “stop” but no one listened.
I then had enough of this name calling game. I stepped in front of my brother and said, “Stop calling him those names. He is not what any of you say at all. Leave my brother alone.” After I said that I wished I hadn’t, but somehow, I knew what I was saying was right. Who am I? I was just a 9-year-old little girl. I had no knowledge of people with disabilities at all. I didn’t even know what “creep” or any of those other words meant, I just had that gut feeling in my heart that something wasn’t right and I knew I had to stick up for my brother at that very moment.
My brother picks on me like a normal brother is supposed to do, and sometimes he takes it way too far. Occasionally I do reply, not very nicely, but after I say something back I feel bad. I promise myself I will try harder next time to remember that yes, he does seem ok at times but he still has autism. I love my brother. I wouldn’t ask for any other sibling in my life. He has helped me and supported me at times too. He always knows when something is wrong and he always asks if I am ok.
So, what’s my perspective on having a sibling with a disability? Well, it’s not very simple you see, sometimes I do wish he was normal and understood everything correctly, but then again, I don’t. Having a brother with autism has taught me many things. No one is perfect, normal is fiction, don’t ever underestimate someone’s abilities, be a leader not a follower, learn from mistakes, and the most gifted are the least expected. My brother is actually a very talented person. I like to think of him as a sculptor. I remember when he was little he would make little men with weapons and tanks out of silly putty, gum wrappers, and Nerds boxes. Every once in a while, I still give him my extra Nerds boxes or gum wrappers because I know he really likes making new little men. He’s also very good at voice impressions; he makes me laugh every time he does one.
My brother makes me laugh in general. Yes, it is hard to explain to everyone how my life with a sibling with a disability is but let me tell you something, he is one of those people that you could not forget. My brother is not normal but neither am I. I am not afraid anymore of being me, and yes, I am a very weird person but hey, at least I am me and so is my brother. I look up to my brother because he’s not afraid of being himself.
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
Tactic
Rationale
Example
Non-Contingent Reinforcement/Planned Attention
Your 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 Written
Your 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 Objects
Your 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 school
All 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 Chores
A 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 System
Your 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.
At the age of 56, a single parent from the baby boom age, my youngest son is now 26, and at this time in my life I need to plan for my retirement.
In a few years I will be heading toward the twilight of my life, so I need to take into account how that affects the life of my son, Kyle, who experiences Down Syndrome. Just like many families who live with and care for their adult sons and daughters for most of their life, it is my responsibility to share vital information that I might be the only one who knows, such as how, what, when, and where services are to be received. This way all the hard planning that has made his routine and the quality of life possible can continue even when I’m no longer able to care for him or myself as I age.
Up to this point most families don’t plan for such events, thinking that they will outlive their loved one with a developmental disability, brushing aside thoughts of what the future might hold for them. If I don’t think about it won’t happen. So usually what happens is when the parent or care giver has a medical emergency there is no plan of care or support for themselves or for their adult son or daughter with a disability, leaving both in need of a plan of care. It will be important to identify who it is left to sort through the maze of services, or lack of services, to help during this very vulnerable time.
Person Centered Planning is a tool that is used to help people plan for the future. Just as you plan along awaited trip you use a simple guide to help you make the journey comfortable to enjoy your precious time you have set aside. When it is time to plan, bring together the people who will be in the family’s life at that critical time. Usually, it is left up to siblings who have not been very involved in their sibling’s day-to-day care. Their parents did a really good job of caring for their sibling, but most find out the hard way what the daily routine looks like for their sibling.
By using the Person Centered Planning method, you have a document on hand so that you are able to have input into a plan of care before a crises.
Aging parents must start thinking about drafting a will and learning about trusts for your peace of mind. Think about the use of Person Centered Planning as a tool, as it can help relay your wishes and concerns. Share information about their care, like who their doctors are, what their care plan is, and other things like a living will. This is in case the parent loses their ability to share vital information to the people who care and to service providers who need to plan action steps. What history of care has been provided, what are the needs, who can help, what is the plan of care when you or I are not able to communicate the needs of our adult sons and daughters? As we age, the plan becomes the family plan, not just for the individual but for the whole family, including the network of support and those who will be left to sort things out.
The process helps pull together all their important information so that people who come in and out of the person’s life have something with which to help plan a positive quietly of life for the individual and their family.
Pierce County Parent to Parent has also put together a care notebook that helps families keep important information together for when the parent is no longer able to speak for themselves or share information that is important, not just for the individual with the disability, but for the family itself.
