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How to Afford Family Caregiving, Part 4: How Can I Afford Long-Term Care?

Posted on by Barb Koumjian

What happens if you, or a loved one, cannot do things that keep you healthy, active and safe? Becoming disabled or having less ability to do certain things can happen to anyone at any age. Accidents or a chronic illness may result in a situation where you may have difficulty with “activities of daily living”. Preparing meals, dressing, showering or taking a bath, going to the toilet and cleaning yourself after, walking easily, being able to clean your house or apartment, taking your dog out for walks, driving, shopping for food –it’s a long list! We may take our abilities for granted until we can’t do them anymore. 

Video transcript in English

When activities of daily living become difficult, many people find others who step in to help: spouses, siblings, adult children, other family members, even friends and neighbors. These are “family caregivers”, and their support allows people to continue to live in their own homes and avoid the high costs of professional caregivers or having to move to a residential facility like a memory-care unit or a nursing home.

Just how important are these free services offered by family members, friends, neighbors and others? 

Services like these, whether given by family members or professionals, at home or in a facility, are called “Long-Term Services and Supports (LTSS)”. According to a 2022 Health and Human Services report, over half of Americans turning 65 today will require LTSS.

The cost of care for LTSS given by professionals, or in a facility:

The average American turning 65 today will incur over $120,000 in future LTSS costs and may have to pay much of that out-of-pocket. A 2023 KFF report stated “the overwhelming majority of adults say that it would be impossible or very difficult to pay the estimated $100,000 needed for one year at a nursing home (90%) or the estimated $60,000 for one year of assistance from a paid nurse or aide (83%).” Traditional Medicare doesn’t cover long-term care, while some Medicare Advantage plans offer only limited  coverage for services like meal delivery.

Medicare does NOT cover LTSS. It’s important to know that Medicare health insurance, which many individuals rely on for health care after age 65, does not cover or contribute to the costs of in-home help for activities of daily living or care in a facility such as a nursing home or memory-care residence.

Medicare does cover temporary care in a rehabilitation facility when your physician orders it for recovery from accidents, surgery, stroke and heart attack, and similar medical reasons. It may also cover short term rehabilitation care in your home after you are released from a hospital or rehabilitation facility. All services are based on medical need and are time limited.

Medicaid or Medicare, Which Covers Long-Term Care? compares which program covers which services and under what circumstances.

In Washington State we have an agency focused on LTSS, the Aging and Long-Term Support Administration (ALTSA). Washington State has several programs that may help families reduce the costs of long-term care.
To find which of the programs and services below you are eligible for, contact Community Living Connections by phone toll-free, 1-855-567-0252, or on their website.

ALTSA has a website page listing the types of services that support people to stay in their own home (these are often called Home and Community-Based Services).When it’s not possible or desirable for you to stay in your own home many people use residential care. Some types of residential care are paid for by Medicaid, if you are eligible. Information about types of residential settings, state supervision of residential facilities, and tools to search for and compare residential options are listed on ALTSA’s page about Long Term Care Residential Options.

Ways to reduce the cost of long-term care:

Washington State Medicaid (Apple Health) 

Long-Term Services and Supports are available for some individuals under Washington Medicaid/Apple Health. There are financial criteria to qualify, including looking at income and assets. In many cases, those who own their own home and are without significant debt are deemed ineligible. To check the eligibility requirements see the Washington State Medicaid Long-Term Services and Supports for Adults booklet. 

Note: WA State offers the Specialized Dementia Care program at some assisted living facilities for people who qualify for long-term care under Medicaid.

The package of specialized dementia care services includes (in part):

  • Care, supervision, and activities tailored to the specific needs, interests, abilities, and preferences of the person. 
  • Coordination with the person’s family to ensure the person’s routines and preferences are honored.
  • Dementia-specific training for staff. 
  • Awake staff twenty-four hours a day.
  • A safe outdoor environment with walking paths and access to a secure outdoor area.
  • Intermittent nursing services, help with medications, personal care, and other support services.

LTSS for Military-connected Individuals:

Veterans can access long-term care through the U.S. Department of Veterans Affairs. 

TRICARE, health insurance for military members and their families, does not cover long-term care but can provide some services and supports, similar to those Medicare does cover. Some military members may be eligible for the Federal Long Term Care Insurance Program.

Private Long-Term Care Insurance:

These insurance policies can be purchased at any time and are meant to last for a lifetime. The cost of these policies is determined by a recipient’s age, health, and location, and rates go up over time. These can be expensive and difficult to find but may be worth looking into.

Not all Long-Term Care Insurance companies operate in the state of Washington – to see a list of all approved agencies, view them at the Office of the Insurance Commissioner.  The Office of the Insurance Commissioner has an online booklet called A Consumer’s Guide to: Buying Long-Term Care Insurance and Other Ways to Pay for Long-Term Care that can answer questions and explain the process for signing up for insurance. 

Washington State Long-Term Care Partnership Program 

Many families liquidate (get rid of, or use up) assets in order to be eligible for Medicaid LTSS services, and to address the issue, the state created the Long-Term Care Partnership Program.  The program is a partnership between long-term care insurance companies and the state of Washington Medicaid program, so that families can keep many of their assets, yet receive Medicaid Services for LTSS.  Under these policies, assets are protected up to the amount of benefits paid under the policy. For example, if the Partnership Policy paid $100,000, then Medicaid would allow you to keep $100,000 in assets, yet you’d still qualify for government LTSS as long as you meet all other qualifications. This is a movable policy, as Washington participates in a “reciprocity” agreement with several other states. See the list of long-term care insurance companies approved to sell Partnership policies in Washington state. 

WA Cares Fund:

A newer option that helps with the expenses of long-term services and supports is the WA Cares Fund, a public, long-term care insurance program.  All Washingtonians who get a paycheck have a small percentage of their earnings go to this fund automatically, just like Social Security and Medicare tax is withheld from a paycheck. The program went into effect in July of 2023.

  • Most Washington employees will have .058 % of their paycheck placed in the WA Cares Fund. WA Cares website has an online calculator so you can check out the actual dollar amount. Everyone contributes at this same low rate, regardless of income.
  • Exceptions: Federal employees do not contribute. Employees of tribal entities only contribute if the tribe decides to have their employees contribute.
  • If you are self-employed you can choose to contribute to the fund.
  • After paying into the system for 10 years you can withdraw from the fund. There are exceptions to the 10 year rule if you are retiring soon or have an emergency need for LTSS. 
  • Funds can be withdrawn beginning in July of 2026.
  • WA Cares funds can be used if you live in another state.
  • Funds can be used to pay for many services and supplies: paying a relative to care for you, making your home safe and accessible, transportation, food delivery, durable medical equipment to help you stay safely in your home, and more. Funds can also be applied to the cost of residential (facility) care.
    You will have to create an online WA Cares account and submit an application
  • If you have contributed to the fund for 10 or more years, you will receive up to $36,500 (adjusted for inflation) to pay for your long-term care.
  • If you need to access WA Cares funds earlier, because of retirement or emergency need, you will get less.

Help for your family caregivers

If you plan to get in-home supports from family members or others, using your benefit from the WA Cares Fund can take some tasks off their list, or pay them for their time. That’s a big help because even though family caregivers help out of love, the time and out-of-pocket costs of caring for you can have an impact on their financial situation.

Tips to Help Parents Reinforce Positive Behaviors at Home

Posted on by Nicol Walsh

Changes in routine, especially during school breaks, can be challenging for families, but using Positive Behavioral Interventions and Supports (PBIS) at home can help create calm, structure, and stronger relationships. PBIS focuses on teaching expected behaviors, using clear communication, and reinforcing positive actions instead of relying on punishment. Families can build supportive routines, model emotional regulation, and use simple strategies to guide behavior at home.

A Brief Overview

  • Positive Behavioral Interventions and Supports (PBIS) is a strategy schools use to teach children about expected behavior.
  • A key PBIS principle is that punishment fails to teach what to do instead. Adults can model calm responses and self-regulation with tools like self-care and mindfulness.
  • Behavior is a form of communication. When children act out, they may be trying to express a need, feeling, or frustration they don’t yet have the words for.
  • The easiest way to change a behavior is to point out what a person does right. Remember this catchy phrase, “5-and-1 gets it done,” to ensure five positive interactions for each negative interaction.
  • Families can use school-based PBIS strategies at home to create safe, consistent, and predictable environments.
  • PAVE provides a video with key information to help families and schools analyze a child’s behavior and develop a positive behavior support plan: Behavior and School: How to Participate in the FBA/BIP Process.
  • If you come up with some great behavior support strategies this summer, be sure to share them with the school in the fall!

Introduction

Changes in routine and seasonal transitions can cause emotional upheaval for families. A few strategies, described below, might help families keep things chill this summer and beyond.

These ideas come from education, where research has helped teachers see the benefits from using Positive Behavioral Interventions and Supports (PBIS). PBIS has been implemented in more than 26,000 U.S. schools. The PBIS framework has been shown to decrease disciplinary removals and improve student outcomes, including grades and graduation rates. When done well, PBIS provides positive social skills, communication strategies and “restorative justice,” (working it out instead of punishing) and may prevent 80-90 percent of problem behaviors.

PBIS is often part of a broader approach called Multi-Tiered System of Supports (MTSS), which helps schools and families work together to meet academic, behavioral, and emotional needs through different levels of support.

Positive support makes learning easier

PBIS research highlights problems with punishments, which are called “aversive interventions.” Research shows that a punished child is likely to go into an emotionally dysregulated state (fight/flight/freeze) that actually blocks learning. Chances are low that the child will know what to do next time because the punishment didn’t provide a learning opportunity.

PBIS teaches what to do instead – and how to do it. Adults who calmly guide children and youth toward a new way of problem-solving can interrupt or prevent an escalation and help the child make better and better choices moving forward.

Keep in mind that adults need to stay regulated to help children. PAVE provides resources to help adults work on their own self-control and support their children:

Behavior is a child’s attempt to communicate

Simple, consistent, predictable language is critical for teaching and reinforcing behavior, says Kelcey Schmitz, who works for the University of Washington School Mental Health Assessment, Research, and Training (SMART) Center.

“PBIS is a game changer for children and youth with behavior challenges and their teachers and caregivers,” Schmitz says. “In fact, everyone can benefit from PBIS. Behavior is a form of communication, and PBIS aims to reduce problem behavior by increasing appropriate behavior and ultimately improving quality of life for everyone. The same approaches used by schools to prevent problem behaviors and create positive, safe, consistent and predictable environments can be used by families at home.”

Schmitz, an MTSS training and technical assistance specialist, provides the following specific tips for creating a successful PBIS home environment.

Support Positive Behavior before there is a problem

PBIS is set up with three layers – called tiers – of support. The parent-child relationship is strengthened by loving and positive interactions at each level.

Tier 1 support is about getting busy before there is a problem. Much like learning to wash hands to prevent getting sick, expected behavior is taught and modeled to prevent unexpected behaviors.  Parents can look at their own actions and choices and consider what children will see as examples of being respectful, responsible, and safe.

Tiers 2 and 3 are where adults provide more support for specific behaviors that are getting in the way of relationships or how the child or youth functions. In a school setting, Tier 2 is for students who need a social group or some extra teaching, practice, and reinforcement.

Tier 3 support includes a Functional Behavioral Assessment (FBA) to find out why the behavior is occurring, and an individualized Behavior Intervention Plan (BIP). PAVE provides a video: Behavior and School: How to Participate in the FBA/BIP Process.

Any student may access supports that include aspects of Social Emotional Learning at all three Tiers. At home, Tiers 2 and 3 naturally will be more blended and may include support from a community provider. Note that targeted interventions in Tiers 2-3 work best when Tier 1 is already well established.

Define, teach, and routinely acknowledge family expectations

Discuss how you want to live as a family and identify some “pillars” (important, building-block concepts) that represent what you value. Talk about what those pillars look, and sound like in everyday routines. To help the family remember and be consistent, choose only 3-5 and create positive statements about them. Here are a few examples:

  • Speak in a respectful voice.
  • Be responsible for your actions.
  • Be safe; keep hands, feet, and objects to self.

Identify a couple of “hot spots” to begin. Challenging behaviors often occur within routines. Perhaps mornings or mealtimes create hot spots for the family. After discussing 1-2 ways to be respectful, responsible, and safe in the morning, teach what each looks like. Have fun with it! Set up “expectation stations” for practicing the plan and assign each family member one pillar to teach to the rest.

Behaviors that get attention get repeated. Notice when a child does the right thing and say something about each success: “I noticed you stopped to pick up your shoes in the hallway. Thanks for putting them away and keeping the walkway safe for others.” The easiest way to change a behavior is to point out what a person does right!

Remember this catchy phrase, “5-and-1 gets it done” to ensure five positive interactions for each negative interaction. When the expected behavior becomes routine, the reinforcement can fade away.

Create engaging and predictable routines

Children crave structure and routine. Adults may look forward to a relaxing evening or weekend, but kids often need regular activity and engagement. Consider that either the kids are busy, or the adults are busy managing bored kids!

Use visuals to create predictability. A visual schedule can display major routines of the day with pictures that are drawn, real photos, or cut-outs from magazines. Create a schedule together, if possible.  Parents can ask a child to check the schedule – especially when moving from a preferred to non-preferred activity. It’s hard to argue with a picture!

Set the stage for positive behavior

Teach, pre-teach, and re-teach. Children need to learn behavior just like they learn colors and shapes. A quick reminder can help reinforce a developing skill: “When we get in the car, sit up, buckle up, and smile!”

Give transition warnings or cues to signal the end of one activity and the beginning of another: “In five minutes, it will be bath time.”

First/then statements set up a child for delayed gratification: “First take your bath; then we can play dolls.”

Focus on Go instead of Stop. Children often tune out words like No, Don’t and Stop and only hear the word that comes next, which is what an adult is trying to avoid. Tell a child what to do instead of what not to do: “Take your plate and put it in the sink.” Save Stop and No for dangerous circumstances that need a quick reaction.

Choices prevent power struggles: “Would you rather play for five more minutes or get in the bath now?”  “Feel free to choose the pink pajamas or the green ones.”

While these strategies may not eliminate all problem behaviors, they create consistency, predictability, and a more positive atmosphere. They teach new skills to help children get their needs met. The solid foundation will help even if challenging behaviors persist by creating a bedrock for additional layers of support.

Final Thoughts

Supporting positive behavior at home doesn’t require perfection—just patience, consistency, and a willingness to learn alongside your child. By using clear communication, setting routines, and teaching expected behaviors, families can create a calm and connected environment where everyone thrives. These strategies not only make summer smoother but also build skills that carry into the school year. If you come up with some great behavior support strategies this summer, be sure to share them with the school in the fall! Working together, families and schools can create strong, supportive systems that help every child succeed.

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Discipline and Disability Rights: What to do if Your Child is Being Sent Home

Posted on by Nicol Walsh

Learning the skills to maintain expected behavior and follow school rules is part of education. All students learn social, emotional and behavioral skills. Students with disabilities may get extra help in these areas of learning. Some have individualized behavior support plans.

When the pre-teaching and interventions fail to stop a behavior from causing a problem, the school might call a parent to say, “Take them home.” What happens next could depend on how well-informed parents are about the rights of students with disabilities.

This video provides key information about what to do if your child is being sent home. The first thing to ask is, “Are they being suspended?” If the answer is yes, the school is required to file specific paperwork. If the answer is no, a parent has choices and may support better long-term outcomes by carefully documenting what happens next.

Below are links to resources referenced in the video:

Transcript of Discipline and Disability Rights: What to do if Your Child is Being Sent Home

Learning the skills to maintain expected behavior and follow school rules is part of education. All students learn social, emotional and behavioral skills. Students with special needs may get extra help in these areas of learning. Some have individualized behavior support plans.

When the pre-teaching and interventions fail to stop behavior from causing a problem, the school might call a parent to say, “Take them home.” What happens next could depend on how well-informed parents are about the rights of students with disabilities. This video provides key information to help.

First let’s talk about what exclusionary discipline means. If school staff remove a student from the place they are supposed to be during school, because of their behavior, then it’s exclusionary discipline. Out-of-school suspensions, expulsions, and in-school suspensions count. An in-school suspension might mean getting sent to the office, for example.

Informal removals like when the school calls parents to take a child home because of their behavior is exclusionary discipline if parents feel they have no choice. A regularly shortened school day also may be a form of exclusionary discipline if the school offers this as the only option.

These final two points might seem like a surprise. Let’s clarify a few things. It’s important to know who is making the decisions. If the family chooses to take a child home early because they aren’t feeling well physically or mentally, then it’s not exclusionary discipline.

If an IEP or Section 504 team decides it’s in the student s best interests to attend school for fewer hours, then it’s not disciplinary. If a teacher takes a student into the hallway for a short chat before returning to class, then it likely doesn’t count as a disciplinary action.

Disciplinary removal from school is a decision made unilaterally by the school. If the family

believes they have no option but to take their child home or if the school imposes a shorter

day without having a meeting to talk it through, then it counts as exclusionary discipline.

The school would essentially be changing a student s placement without the consent of

the school-and-family team in charge of those decisions.

We need to know a few things about student rights to fully unpack this topic, so here’s a quick take  on student rights. They are shown here as a pyramid. All students have rights at the bottom. Students with special educational services are at the top and have all these rights.

Special education rights are protected by a federal law called the IDEA the Individuals with Disabilities Education Act. IDEA protects the rights of students with Individualized Education Programs IEPs. IDEA has specific rules about what has to happen when a student with an IEP is excluded from school for behavior.

A student s Civil Rights are protected by federal laws also. The United States Office for Civil Rights OCR upholds these laws and provides specific guidance about what schools have to do when they discipline students with disabilities. Civil Rights laws protect students with IEPs, students with Section 504 Plans, and students with known or suspected disabilities who need to be evaluated to see if they are eligible for services. Sometimes discipline is the reason a student is evaluated to determine eligibility for services.

General Education Rights are protected by ESSA, which stands for Every Student Succeeds Act. Every child in the United States has the right to attend school, regardless of life circumstances that might include disability, poverty, racism, unstable housing, citizenship status, or something else. The public school responsible for serving a student cannot send them away without following specific state and federal rules.

To uphold the rights of students, schools are responsible to teach expected behavior in culturally appropriate ways and to help students stay in school and learning. The US Department of Education provides information about student rights. In July 2022, the Departments Office for Civil Rights published a 41-page document describing the rules schools must follow when they discipline students with disabilities. That document is called Supporting  Students with Disabilities and Avoiding the Discriminatory Use of Student Discipline under Section 504 of the Rehabilitation Act of 1973.

The document includes information that students with disabilities and students who are Black, Indigenous, or People of Color are disciplined at higher rates. BIPOC students with disabilities are the most impacted by discriminatory policies and practices. As part of their responsibility to support inclusion, schools may not exclude students in ways that discriminate. Knowing that schools are responsible to teach and cannot send students away without going through a formal, well-documented process, what’s a parent to do if the school calls and says to take the student home?

The rest of this presentation provides some guidance, summarized on this slide. The first step is to ask whether the student is being suspended. Requesting paperwork and tracking missed time is critical to hold the school accountable. An important number in this process is 10 that s how many days a student with a disability can miss due to discipline before the school is responsible to host a specific meeting called manifestation determination.

More about that in a moment. Communication is critical to improving outcomes when a student’s behavior is interfering with school. Families can ask for regular information about a student s behavior, and schools can send data tracking sheets home to make sure everyone knows how things are going. Let’s unpack these five points.

For a student to be sent home, the behavior must be severely disruptive or dangerous. If that’s what’s happening, then your child is being suspended or emergency expelled. Schools must report suspensions and expulsions to the family and to the state. If the school calls and asks you to take your student home, Step 1 is to ask: Are they being suspended?

If a student is being formally excluded from school because of their behavior, state law requires written notice to parents that includes: A description of what they did wrong including what school rule was broken Dates that the suspension starts and ends What the school tried first that didn’t work and why they chose to send the child home How the student will be provided education while away from school Information that the student and parents have the right to meet with a school administrator to talk about what happened And information about the family s right to appeal the action.

Note that all this information must be provided in a language and format that is accessible to the family. If the school says the student isn’t being formally suspended, then parents have choices. They can take the student home and call it a mental health day. Washington law requires schools to accept behavioral health reasons for students to be absent. On this slide are

a few questions families may want to consider asking:

  • Parents can ask for a meeting to talk about services. If the student doesn’t have a Section
  • 504 Plan or an IEP, it might be time to request an evaluation to see about eligibility for services. If the student doesn’t have a positive behavior support plan, a meeting could be arranged to talk about that option.
  • Parents might say they want the student to stay at school and ask for information about how and where education will be provided if the student stays. Parents can request paperwork about what happened and what the school tried before calling home.
  • Be sure to ask how the school will record the absence if the student leaves school.
  • Will it be excused, unexcused, or recorded as exclusionary discipline?

One reason it’s important to document every time a student is sent away for behavior is a specific special education process called Manifestation Determination. Manifestation Determination is a formal name for a meeting where the school and family talk about what happened and decide whether the behavior was directly related to the student s disability.

If yes, the team determines that the behavior was a manifestation of disability. In that case, it’s especially important to consider what additional supports are needed to scaffold the student’s behavior doesn’t keep interrupting school and learning. Manifestation Determination is required when a student with disabilities misses 10 or more days of school because of behavior. Those days might include partial days, informal suspensions, and in-school suspension.

A Manifestation Determination meeting includes discussion about whether an IEP, Section 504 Plan, or behavior support plan is being followed appropriately and whether it’s got everything the student needs to successfully learn expected behaviors. If no, the team is responsible to make changes. That might mean gathering more information through an evaluation or bringing together more expertise from the district or outside providers. The team may discuss changing the student s placement.

Washington s state educational agency, OSPI, provides detailed information about manifestation determination and other disciplinary rules for students with disabilities. One place to get that information is a Technical Assistance Paper called TAP #2, available through OSPI s website, which is k12.wa.gov. PAVE provides a link on the page where you clicked to watch this video.

Here is a general tip for parents to prepare for ups and downs. If parents tell the school they want to know the good, the bad, and the ugly, they are setting up a communication pathway for whatever happens. Hopefully, collaborative problem-solving will result. For example, knowing what’s going well will help everyone support the student to build on strengths. Knowing what’s not going well might prevent problems from getting worse. Saying you want to know the ugly might help the school understand that you want to work together and don’t want them to gloss over a behavioral incident by sending your student home without an official suspension, for example. When every trouble is treated as a chance to learn and improve, progress can accelerate.

Here s a PAVE resource that might provide additional information you’re looking for. On our home page, under the calendar, is a Behavioral Health Toolkit, with information about crisis systems, school-based services, medical systems, family support agencies, advocacy opportunities, and more. Within the behavioral health toolkit is a video about best practices for supporting behavior at school. A Functional Behavioral Assessment is called an FBA. That assessment can gather information for schools and families to develop a positive behavior support plan.

The name for that plan is BIP Behavior Intervention Plan. PAVE s video can help families and schools work to make sure the FBA and BIP are unbiased and built to teach a student what they can choose instead of behaviors that are leading to problems. PAVE provides a sample letter requesting an FBA. Look for it within our toolkit of sample letters.

This training is provided by Parent Training and Information (PTI), a program of PAVE. Our non-profit has been helping families in Washington State since 1979. Students, family members, and professionals can get direct assistance by going to our website, wapave.org, and clicking Get Help. We provide language translation options. Your can also leave a message by phone to request help: 800-572-7368. If you need help with the accessibility of any of our resources, please let us know. This slide is a reminder that PAVE is not a legal service agency and cannot provide advocacy, advice or legal representation. Our goal is to empower families by providing information and access to resources.

Thank you for listening and learning today and for being an advocate for someone with unique needs! Remember that it’s not your job to hold up the entire world and that you need time to care for yourself and recharge your batteries. Please practice self-care and make sure your own social-emotional needs are a priority. PAVE is here to help at wapave.org.