Kinship Families: Early Intervention, Special Education, and 504 Plans

Kinship families are created when a relative or close family friend raises a child or children when parents can’t. The relative or friend is often referred to as a “kinship caregiver”. This article will be helpful for new kinship caregivers and long-term kinship caregivers if their child or children has or develops a disability. This article focuses on early intervention and special education for children with disabilities in Washington State. It describes early intervention and special education and how to get those services or alternative services.  

It has information about situations like: 

  • The child got special education or had a 504 plan at their previous school 
  • The child received early intervention services with their birth or previous family 
  • A kinship caregiver thinks a child does not have the usual skills for their age, or they are not doing well in school, and the caregiver thinks it may be due to a disability 

This article also has information about the school enrollment process and documents needed and the right to go to school in Washington which applies to all children whether or not they have a disability. 

For schools, who can act as a parent?

Many different people may be defined as parents under the Individuals with Disabilities Education Act (IDEA), a U.S. federal law which makes sure eligible children with disabilities receive a free, appropriate public education (FAPE). It covers children from birth through age 21.   

The definition of a parent states: 

(1) A biological or adoptive parent of a child; 
(2) A foster parent, unless State law, regulations, or contractual obligations with a State or local entity prohibit a foster parent from acting as a parent; 
(3) A guardian generally authorized to act as the child’s parent, or authorized to make educational decisions for the child (but not the State if the child is a ward of the State); 
(4) An individual acting in the place of a biological or adoptive parent (including a grandparent, stepparent, or other relative) with whom the child lives, or an individual who is legally responsible for the child’s welfare; or 
(5) A surrogate parent who has been appointed in accordance with § 300.519 or section 639(a)(5) of the Act”.   

Kinship caregivers may fall under one or more of these categories. It’s important for kinship caregivers to understand what their rights and responsibilities are about their child’s education. If kinship care does not involve legal steps to remove a parent’s rights, the birth/biological parents still have the right to make decisions about their child’s education, such as:

  • Where the child goes to school 
  • Whether the child can get special education services and supports or a 504 plan 
  • What goals, services, etc. are written on the IEP 
  • Notifications about and the right to attend IEP meetings (remotely, if necessary). 

In WA State, the school will, based on the law above, assume you have the right to make educational decisions about the child, but the child’s parents can still intervene if they wish. 

There is information available about kinship care situations where the kinship caregiver has rights to make educational (any many other) decisions for the child. Those situations (statuses) may include guardianship of a minor child, adoption, or getting a Power of Attorney from the birth parents to make certain decisions about the child’s education and other areas. WA State’s Kinship Navigators can connect you with legal aid resources. One online source is Washington Law Help, a “public law library” for legal information in WA State. It’s maintained by the nonprofit Northwest Justice Project and explains legal terms and legal situations with easy-to-understand wording in English, Spanish, and 8 other languages commonly used in Washington.

School Enrollment

Documents you may need: 

  • Something that verifies your address, like a utility bill 
  • Something that confirms the child’s age, like a birth certificate or a certified doctor’s statement 
  • A record of the child’s immunizations 

The WA State Governor’s Office of the Education Ombuds is the state’s problem-solving office for educational issues or questions. On their website they write: 

“Schools often list examples of the kinds of documents you can use for enrollment. If you do not have the specific documents that the school generally requires (like a copy of bills, or a birth certificate for your child), talk to the school enrollment office about your situation.

Alternatives to Birth Certificates/Passports: Schools must accept alternatives to show a child’s age or date of birth. The school cannot insist on receiving a birth certificate or passport if you do not have one. Other alternatives might include an adoption record, a certified statement of a physician, or an immunization record with a birthdate on it. 

Proof of Residency: Schools generally ask for proof of where you are living in order to be sure your child is a resident of the district. However, if you are currently without a regular place to live (if you are experiencing homelessness), the school cannot require documents before enrolling your child. If this might apply to you or a child you are caring for, ask at the school or district office to talk with the school district’s “McKinney Vento Liaison.” 

Remember, all children who live in Washington State have the right to access public education. If you are trying to enroll your child in school, but you do not have the paperwork the school usually requires, please ask for help. 

You can ask for help at the school or at the school district office. You can also contact our office at 1-866-297-2597 or visit our Get Help page to contact us through our online intake system.”  

Kinship caregivers can enroll their child at the office of the local school. When a child is enrolled in a school district, they are usually placed in the school closest to where they live. 

  • How to find your local school district: School Districts, Charter Schools, Tribal Schools and Education Support Districts (ESDs). Includes links to each district or school’s website.
  • How to request information from a previous school: Contact the school office at the child’s last school. If you don’t know the school’s name, try an online search such as “high schools in (Town Name, State)”. Schools usually have their own websites and contact information.

What is Early Intervention?

Early Intervention is a system of services for infants and toddlers (birth to age 3) that have developmental delays, risk of developmental delays, or diagnosed conditions. Services and supports may include speech, physical or occupational therapy, hearing assistance, nursing care, and vision care. The services are provided in the home or in the community.
Every state is required to offer these services under Part C of the Individuals with Disabilities Education Act (IDEA Part C). Services are either free, low-cost, or billable to some insurances.

Families are assigned a Family Resource Coordinator (FRC) and an Individualized Family Service Plan (IFSP) is created by the FRC and the parents (kinship caregiver) for services to support the child’s development and activities for the family to do with the child at home.

When a child reaches age three, the child can transition to special education if needed with a new evaluation. Kinship caregivers may want to start with PAVE: Early Intervention: How to Access Services for Children Birth to 3 in Washington

What is Special Education?

“Special education is instruction that is specially designed to meet the unique needs of a child with a disability. This means education that is individually developed to address a specific child’s needs that result from his or her disability. Since each child is unique, it is difficult to give an overall example of special education. It is individualized for each child.

Some students may be working at the pre-kindergarten grade level, others at the first, second, or third grade level. There may be students whose special education focuses primarily on speech and language development, cognitive development, or needs related to a physical or learning disability”. 

-Center for Parent Information and Resources

A child getting special education has an Individualized Education Program (IEP) created for them by an IEP team that includes

  • Parents or Guardians (including kinship caregivers)
  • Student (when appropriate)
  • Special Education Teacher
  • General Education Teacher
  • School Representative, Administrator
  • Specialist or service providers
  • Additional Individuals (a parent advocate or friend)

-PAVE, Who’s Who on the IEP Team?

What is a 504 Plan?

“A student with a disability is protected by multiple federal laws. One of these laws is the Rehabilitation Act of 1973. This law is enforced by the U.S. Department of Education’s Office for Civil Rights. Section 504 is part of the Rehabilitation Act and it helps protect students from being treated unfairly because of their disability.”

“The right to a Free Appropriate Public Education (FAPE) is protected by Section 504 and the Individuals with Disabilities Education Act (IDEA). The most common way schools protect Section 504 FAPE rights is through accommodations. A student might have specifically designed help to accomplish their schoolwork, manage their emotions, use school equipment, or something else. The sky is the limit, and Section 504 is intentionally broad to capture a huge range of possible disability conditions that require vastly different types and levels of support.”

PAVE, Section 504: A Plan for Equity, Access and Accommodations

A document, called a Section 504 Plan or just 504 plan, is developed by a team at the child’s school, and includes the child’s parents (kinship caregiver), the 504 coordinator, teachers, and other appropriate staff. The plan is shared with the child’s teacher and any other appropriate staff and is reviewed and updated by the team regularly and as needed.

What to do if the newly arrived child or children had special education, had a 504 plan or received Early Intervention, and they are now in a new school district, town, or state:

Early Intervention:

If the child used to live in a different state, contact Washington’s Early Support for Infants and Toddlers (ESIT) Program. It’s managed by the Department of Children, Youth and Families (DCYF). A new Family Resource Coordinator will be assigned.

You can tell them where the child used to live. If you do not have a copy of the Individualized Family Service Plan (IFSP) and if the FRC is unable to get it from the child’s previous state, the FRC may recommend a new evaluation.

If the child was already living in WA State, contact the ESIT program to let them know the child’s new address and family situation so an FRC can help you continue the child’s plan.

Special Education:

Students who get special education have an Individualized Education Program (IEP). IEPs are documents that outline instruction, services, goals and supports for students in grades Kindergarten through graduation. Parents, including kinship caregivers, are essential in helping a school create an IEP and review and update it every year or as needed.

IEPs and Free Appropriate Education (FAPE) in the Least Restrictive Environment (LRE) are required by federal law, the Individuals with Disability Education Act (IDEA).

  • When a child changes schools inside a school district, they keep the same IEP.
  • If a child moves to a new district from inside or outside Washington State, there’s a process to get comparable (similar) instruction and services.

The new school must provide comparable (similar) services immediately and hold an IEP team meeting within 30 days to decide whether to use the existing IEP or develop a new one. If the IEP team (including parents/kinship caregivers) decide a new IEP is needed, the school must keep providing comparable services until the new IEP is ready to use.

The school must get permission from the parents (kinship caregiver) to have a new evaluation done for a new IEP.

If the kinship caregiver doesn’t have a copy of the child’s IEP, they can contact the child’s previous school and ask for one copy to be sent to the new school, and one copy to the kinship caregiver. Knowing what’s in the child’s IEP, and keeping records is important to make sure the child is getting the services and supports they need.
Another way is for the new school to contact the previous school to get the IEP. In that case, ask the new school to make a copy and send it to you as early as possible before the first IEP team meeting.

To get help with problems with this process, contact PAVE through PAVE’s Support Form.

504 Plans: 

If a child is going to a new school in the same district, the new school will use the current 504 Plan.

If a child is moving from another school district or another state, the child still has a right under federal law for the accommodations, but the current plan isn’t transferred. This is because putting 504 Plans into action may be slightly different from state to state.

  • Parents (kinship caregivers) must provide documentation (the same type as required by the current 504 Plan) and advocate for current accommodations to continue (or be improved or added to).
  • Schools are required to provide comparable (similar) services and accommodations until a new plan is approved, but they will need the current 504 Plan to make that happen.

If the kinship caregiver has a copy of the 504 Plan, and the documents used to create it (such as medical records and diagnosis from a doctor), they can make copies and deliver them to the new school. Use email to send them if you have it to create a record of what was sent and the date.

If the kinship caregiver doesn’t have the 504 Plan document or the documents, use the same process as the IEP. Contact the office at the previous school and request they send the 504 Plan, along with all the child’s school records.

Schools are required to provide school records, but they may need a copy of a court order (if that is how a child was placed in a kinship family), or another type of document to prove they are acting as the child’s parent.

Kinship caregivers can contact these organizations if they are having problems with getting school records:

Finding out if a child needs Early Intervention, Special Education or a 504 plan

Age birth to 3

For children age 3 and up, the school district where the child attends (or will be attending) school is where kinship caregivers can request an evaluation (testing) to see if their child is eligible for Special Education, or possibly a 504 Plan.

A federal law requires all school districts to find, evaluate (test), and if eligible, serve any infant, toddler, or school-aged child who has a known or suspected disability that might impact (interfere with) their learning in school.

If you are not sure how special education would work for your child, you can fill out PAVE’s support form and you’ll hear back from a PAVE team member with first steps and resources to learn more.

Learn More

How to Afford Family Caregiving, Part 3: Offset Some Costs of Caregiving

Being a family caregiver can be financially stressful. This tip sheet, part 3 of a 4-part series, tells you how to find benefits for those caring for veterans or a kinship family, tax breaks, get paid as a family caregiver, programs that offer financial assistance for caregiving tasks.

Ways to offset some costs of caregiving:

If you care for another family member’s children, or the children of a close family friend (Kinship Care), you may qualify for benefits and resources through Washington’s Aging and Long-Term Support Administration (ALTSA). Childcare and financial help are two possible benefits, and a Kinship Navigator can tell you which benefits you are eligible for and help you apply.

  • This applies even if you are an informal kinship caregiver who is not a legal guardian or if you have not been appointed as a child’s foster parent.

Benefits: Local and state agencies can help with benefits you or the person you care for may qualify for, like financial support, services, or lower cost options.

  • Call Community Living Connections at 1-844-348-5464 to ask for assistance as an unpaid family caregiver.
  • 211 Washington (click on link OR phone 2-1-1) can also help you connect with state and local agencies.

Tax credits that refund some expenses of paying someone to care for a dependent family member while you work or are looking for work:

Caring for a veteran

Veterans Affairs offers different programs which support family members caring for a veteran. Some offer training and a wide range of supports such as peer mentor support (a caregiver who has ‘been there’ and can help you navigate caregiving), one-on-one or group coaching sessions, resource referral, and respite care. Learn about the different benefits at US Department of Veterans Affairs VA Caregiver Program.

One program offered through Department of Social and Health Services, and funded by the Veterans Administration, is Veteran Directed Care. This program may allow the family caregiver to be paid for caregiving work.

Getting Paid for your work as a family caregiver: If the family member or friend you care for qualifies, this may be an option for you.

Department of Social and Health Services (DHSS) -includes Developmental Disabilities Administration (DDA):  To be a Paid Caregiver for a Family Member or Friend

An exception to this is if the person needing care is using Veteran Directed Home Services.

To find out if the family member or friend is eligible:

To apply to be a paid caregiver for a family member or friend (Individual Provider) you can complete the CDWA application to begin the hiring process at any time. More information on the CDWA hiring process: see this Individual Provider Hiring Guide.

Get financial or volunteer assistance for other people to do caregiving tasks:

How to Afford Family Caregiving, Part 1: Paid Leave and Job-protecting Unpaid Leave in WA State

Being a family caregiver can be financially stressful. In addition to taking on the costs of caring for a close friend or family member, caregiving may make it difficult to work at a full time job. Caregivers may struggle to stay employed and be financially stable. This tip sheet is Part 1 of a series with information to help family caregivers with the financial side of caregiving.

Get paid while taking WA State Family & Medical Leave

This is not the same program as the Federal Family & Medical Leave Act (FMLA) which is a job-protection program and is unpaid leave.

The State of Washington can grant you up to 90 percent of your average weekly wage. The number of weeks you can get paid for depends on whether you are taking medical leave, family leave, or a combination. Visit the Washington Paid Family & Medical Leave website for details about medical leave and family leave.

To see if you are eligible for paid leave, take the “quiz” on the Washington Paid Family & Medical Leave site.

To apply, on the Washington Paid Family & Medical Leave website, click on the small arrow on the “Individuals and Families” tab on the top of the website page. Click on items 1-5, in order to learn about the process, what paperwork you will need, and apply.

Unpaid leave job protection

The Family and Medical Leave Act (FMLA), a federal law, protects the rights of employees to take unpaid leave without the threat of job loss for certain situations.

Every year employees are allowed up to 12 weeks of unpaid leave for:

  • A child being born and/or care for child within a year of birth
  • A child being adopted or put into foster care in the employee’s care
  • Care for a seriously ill child, spouse, or parent
  • Employee’s serious health condition that makes them unable to work
  • for qualifying exigencies arising out of the fact that the employee’s spouse, son, daughter, or parent is on covered active duty or call to covered active duty status as a member of the National Guard, Reserves, or Regular Armed Forces.
  • Military service personnel are entitled to 26 work weeks of leave within a year to care for a spouse, child, parent or next of kin.

These benefits apply to most employees who have worked at the same employer for a year or more, if

  • The company has at least 50 employees
  • The employer is a school or part of the local, state, or federal government.
  • Use the US Department of Labor’s guidelines to see if you are eligible for FMLA. View or download this fact sheet on the Family and Medical Leave Act.

Important to Know:

  • Employers are allowed to require an employee to first use up their time-off benefits (vacation, sick time, etc.) as part of the FMLA time, BUT when paid leave is used for FMLA-covered reasons, the leave (and the employee’s job protections) are protected under FMLA.
  • On return from FMLA leave (whether after a block of leave or an instance of intermittent leave), the FMLA requires that the employer return the employee to the same job, or one that is nearly identical (equivalent). See the FMLA Factsheet above for details on what makes a job equivalent.
  • An employee does not need to take FMLA leave all at once. The law says leave can be used in several blocks of time (“intermittently”) or used to reduce an employee’s regular hours.
  • Using FMLA does not reduce your allowed Washington State Paid Leave benefit, so you can use both types of leave. It’s important to note that Paid Leave and FMLA usually run at the same time, since many Paid Leave events also qualify for FMLA.

For both types of leave:

Employers are allowed to ask for information to support reasons for the leave. Employees can provide this required information in several formats, including letters that are from a healthcare provider written on official letterhead, documents issued by a branch of the military, or on a Certification Form that can be found on the Department of Labor site or the Washington Paid Family & Medical Leave site.

How to Afford Family Caregiving, Part 2: Job Flexibility

Being a family caregiver can be financially stressful. In addition to taking on the costs of caring for a close friend or family member, caregiving makes it difficult to work at a full time job. Caregivers may struggle to stay employed and be financially stable. This resource discusses job flexibility and possible options for getting paid for what you do as a family caregiver.
Job Flexibility:

Family caregivers can discuss several options with their employer that can make it easier to keep employment: flexible hours, remote work, job-sharing, or per diem work (by-the-day or on-call work). Not all employers will be open to these options, and family caregivers need to know that job-sharing and per diem work can cut down on the number of hours they will work and result in lower income. Important benefits like health insurance may not be available with job-shares and per-diem.

When looking for work, family caregivers can put an emphasis on finding an employer that will honor their work as a caregiver by allowing the options above. One course of action is looking for work for a non-profit, where employees and management know first-hand how vital unpaid caregivers can be for the safety and stability of those who need care.

The Nonprofit Association of Washington has a non-profit job page that can help.

Idealist.org, a 502(c)3 nonprofit, is a site dedicated to listing nonprofit and volunteer employment. Job listings can be filtered by location preferences, on-site or remote and hybrid work (part time on-site, part-time remote). Jobs may be full time or part time. Salary ranges are listed and organization information is included.

Flexjobs lists flexible jobs at both for-profits and nonprofits. It requires a paid subscription and states that it screens for scams.

An alternative to traditional workplaces that many caregivers have embraced is gig and freelance work. Gig work can be done with a single company or service or with several companies as freelance work. Well-known gig work employers include companies such as UberInstacartDoorDash, and Rover. These positions let caregivers decide their own hours. A smartphone and a car are required.

Freelance work is a bit different, with the companies and/or individuals that you work for changing regularly. Several websites cater to freelancers, such as fiverrtaskrabbit, and upwork. Flexjobs, noted above, also has freelance job offerings on its site.

For Care Partners/Caregivers of Individuals Living with Parkinson’s Disease

At Lifespan Respite WA, we focus on caregivers. Our team gathered resources specifically for caregivers from the organizations listed below, to support you in your life with your care partner.

American Academy of Neurology’s Brain&Life website has a quick search function for all types of neurological diseases including Parkinson’s, as well as clinical guidelines (best practices) and information on clinical trials and clinical research.

Davis Phinney Foundation for Parkinson’s

1-866-358-0285; contact@dpf.org

“Dedicated to helping people with Parkinson’s disease live well today. Provides information, inspiration, tools, resources, and opportunities to people living with Parkinson’s Disease and care partners to better manage their disease and promote increased engagement in health.”

Among a list of more traditional resources, the Davis Phinney Foundation focuses in on person-to-person support for those living with Parkinson’s and their care partners:

  • Parkinson’s Ambassadors: located in 35 states and Canada (one on one support)
  • “We have more than 70 Ambassadors located in 35 states and Canada. Ambassadors are available to connect with individuals, families, and groups to help answer questions about living well with Parkinson’s and connect you with resources and relationships to provide support.”
  • Living with Parkinson’s and Care Partner Meetups on Zoom (comes with how-tos for Zoom and access to recordings)
  • “Our monthly Living with Parkinson’s Meetup brings together all people diagnosed with Parkinson’s—young, old, early, late—for open, honest, real, and always fun conversations about everything you’ve ever wanted to know about Parkinson’s but were afraid to ask.”

La Davis Phinney Fundación en Español

Usted puede Vivir Bien Hoy si ha sido diagnosticado con Parkinson y nuestra misión es acompañarlo y apoyarlo durante este camino.

A continuación, encontrará una serie de enlaces a distintos espacios y formularios mediante los cuales queremos establecer un puente de comunicación e información con nuestra comunidad de Parkinson de habla hispana.

Y no olvide que siempre puede contactarnos enviando un correo electrónico a la siguiente dirección: cmartinez@dpf.org.

Sitio Web : En español

Lifespan Respite WA’s website can link care partners to the Washington Family Caregiver Learning Portal (from TRUALTA), which has free training for the type of care individuals with Parkinson’s may need at home. Once in the Portal, type “Parkinsons” in the search bar.

The Michael J. Fox Foundation for Parkinson’s Research

This research-focused organization does have good advice for caregivers, found under the topic “Care Partners”.   The “Support Group” page has some specifics for starting a support group. If you don’t find one that works for you, there is this list:

Parkinson’s Buddy Network is an online community of people impacted by Parkinson’s designed to help you make meaningful connections, engage in important dialogue, find useful resources and build long-lasting relationships.

NeuroTalk has a robust Parkinson’s disease community.

Caring.com hosts a Parkinson’s support group.

HealthUnlocked has Parkinson’s community pages.

Smart Patients Parkinson’s Disease Community offers self-care tips.

PatientsLikeMe has a Parkinson’s forum.

    MyParkinsonsTeam. The website says “MyParkinsonsTeam is a free social network that makes it easy for you to:

    • get the emotional support you need from others like you, and
    • gain practical advice and insights on managing treatment or therapies for Parkinson’s disease”

    Note that this site is run by a for-profit organization, so you may wish to carefully read the “About” section.

    Northwest Parkinson’s Foundation

    Toll-Free: 1-877-980-7500
    Seattle area: 206-748-9481
    Email: info@nwpf.org Website: https://nwpf.org

    “Our Mission is to transform the way people live with Parkinson’s through awareness, education, advocacy, and care.”  They serve in Washington, Alaska, Montana, and Idaho.

    Social Services: “Northwest Parkinson’s aims to fill in the gaps between neurology visits by providing support for People with Parkinson’s, Caregivers, Family members, and Providers in Washington, Alaska, Montana, and Idaho. Social Work is available to provide PD related education and resources or simply lend a listening ear. We offer:

    • 1 to 1 phone consultations to navigate life with Parkinson’s and caring for someone with Parkinson’s. During these consultations we can go over a range of resources from Support Groups, in-home care, placement advisory referrals, Neurology/MDS referrals, financial assistance resources, online and local movement/fitness programs, among others.
    • Support Groups. NWPF runs a few different support groups for Carepartners, Adult Children, and Lay Facilitators of PD Support Groups. We also keep a listing of Support Groups in each of the 4 states we service.”
    • Many other supports and services

    Parkinson’s Foundation   Parkinson’s Foundation en Espanol

    “Parkinson’s Foundation focuses on research and access to healthcare for individuals living with Parkinson’s Disease. The Pacific Northwest Chapter serves residents of Alaska, Idaho, Montana, Oregon and Washington with local resources”

    Support for Care Partners includes among other resources

    For programs, support groups and specialist referrals, call the Parkinson Foundation’s Helpline at 1-800-473-4636, or by email: Helpline@Parkinson.org.

    Stanford Medicine has the Caregiver Corner with fact sheets, blog, articles, videos, and podcasts.

    Lifespan Respite WA for Professionals: Social Services and Medical

    What Lifespan Respite WA does:

    We offer interpretation if arranged in advance for almost any language. Email us in a preferred language to set this up.

    Contact us:     Email: getrespite@wapave.org; Phone:  253-442-3214

    Essential Information

    • Caregivers must not be receiving respite care funded through any other program or organization, whether government-funded or private sector. Family helping out by paying for respite care doesn’t count as “paid respite”. (On the other hand, families who are approved for publicly funded programs, but who won’t get services for at least 30 days or on a no-paid-services list are eligible for a Lifespan voucher).
    • We do not ask for any proof of condition or diagnosis, any proof of income, or any documentation. Everything is self-reported.
    • We are required to get a statement (emailed, texted) from a caregiver if the care recipient is on Medicaid, that no paid respite is being received from any program or agency. Financial help from family members is ok.
    • This program is for PLANNED, not crisis or emergency respite. No exceptions.
    • Short-term!! Must use within 4 months, unless for summer camps or recreation. In that case, proof of registration is required.
    • Extensions may be approved under compelling circumstances, on a case-by-case basis.
    • Usual award amount is $1,000.00 per household.
    • ONE voucher per household—if there are multiple care recipients, voucher is evenly split and can’t be transferred from one family member to another.
    • There is a wait list since there are always more applications than funds. We cannot tell exactly when an award will be made. According to our contract with the state, vouchers are given based on the date of application, but also on an equitable distribution of vouchers across WA State, taking into account the population density and numbers of applications from different regions.
    • Applicants get an email notice when we get their application. We will be sending interim notices to let applicants know their application is still on the list
    • Caregivers can reapply in one year from the date of their most recent application.
    • Caregivers have the responsibility to find out the hourly or session rate charged by the program or agency, and to keep track of hours or sessions so as not to run over the voucher amount. Caregivers are financially responsible for any charges over the amount of the voucher.

    Important for family caregivers to know

    • The biggest barrier to voucher use, for many caregivers, appears to be contacting programs or agencies and persisting until they get a response back. This is why we recommend checking providers out even before a voucher is awarded. Check our “List of Providers” page to find out if the type of respite they have in mind is available in their area.
    • There is no guarantee that any program or agency has availability even when on our Providers list.
    • We have providers of some type in each county in WA; but some counties do not have much provider choice. We are constantly working on that!
    • Voucher applicants may suggest a provider if there is no availability among the registered providers, or if they have requirements registered providers cannot meet. The team will reach out and see if the suggested provider is willing to take the voucher funding.
    • We can’t pay a family member OR ANY OTHER INDIVIDUAL to be a caregiver. The only respite we will pay for is from one of our Registered providers.

    Respite Offers a Break for Caregivers and Those They Support

    Respite offers a short-term break for caregivers and those they support. This article provides information and resources to get started seeking respite services. Resources and links include sources of respite in WA State.

    A Brief Overview

    • Respite offers a short-term break for caregivers and those they support. This article provides information and resources to get started seeking respite services. Resources and links include sources of respite in WA State.
    • Pathways to Respite, an online booklet published by several Washington agencies, provides further guidance. The guidebook defines caregiver stress and explains why breaks are critical to everyone’s well-being.
    • The ARCH National Respite Network and Resource Center provides a free, downloadable 17-page guidebook, ABCs of Respite: A Consumer Guide for Family Caregivers. ARCH stands for Access to Respite Care and Help.
    • Lifespan Respite Washington, a program of PAVE, offers vouchers to help fund respite care.
    • Veteran’s families may qualify for respite through the Program of Comprehensive Assistance for Family Caregivers (PCAFC), operated by the United States Department of Veterans Affairs.

    Introduction

    “Putting the needs of everyone else before your own may solve an immediate stress; however, in the long-term, it can lead to increased anxiety, frustration, overwhelming feelings, resentment, depression, burnout, and even illness. Whether you think of yourself as a caregiver or not, these are all signs of caregiver stress.”

    Modern families come in many styles. Primary caregivers may be parents or spouses or adult children, and they might be other relatives (kinship providers), friends, or neighbors. “Care recipient” is a term for anyone who requires assistance for daily living. “Caregiver” refers to anyone who provides regular assistance to a child or adult with chronic or disabling conditions.

    Time apart can boost well-being for all: While caregivers temporarily shift their focus to self-care, care recipients have time to meet new people and explore new interests.

    Finding an appropriate respite service and organizing payment can feel challenging. This article offers guidance to simplify the steps.

    Check standards and safety measures

    When researching a respite agency, caregivers can check whether the agency meets standards and follows appropriate safety measures.

    Lifespan Respite Washington provides a checklist with questions to think about. Here are a few examples:

    • How are the workers chosen and trained?
    • Can the respite worker give medicine or help with medical tasks?
    • If the provider will be driving the care recipient, do they have a valid driver’s license? Is the company insured to have their workers do that?
    • How are emergencies and problems handled?

    Registered, publicly funded respite providers need to meet certain standards and qualifications, including background checks and training. The public agency that pays for the service is responsible to track and share information about those procedures and quality measures. If respite is paid for by private medical or long-term care insurance, providers must meet the insurance company’s standards. Caregivers can ask an insurance company representative to explain the standards and how the insurance company makes sure the standards are followed.

    Another helpful resource: the ARCH National Respite Network and Resource Center provides a free, downloadable 17-page guidebook, ABCs of Respite: A Consumer Guide for Family Caregivers. ARCH stands for Access to Respite Care and Help.

    What respite services would be most helpful?

    Respite includes a broad range of services. Some organizations offer short-term, overnight stays in their facilities and some offer daytime services. Some respite services are delivered in the home, like:

    • personal hygiene care
    • meal preparation
    • light housekeeping
    • companionship, activities, or supervision

    Community Living Connections (CLC) has an online tool to help caregivers figure out what type of help they may want or need.

    Washington’s Pathways to Respite booklet includes “fill-in-the-blanks” tools to help define needs, like these examples:

    “I would like to take a break, but I am concerned that___________” and “If I had some time to myself, I would _____________.”

    Pathways to Respite was developed by Informing Families, a resource of the Washington State Developmental Disabilities Council, in partnership with the Washington State Developmental Disabilities Administration, Aging & Long-Term Support Administration, and PAVE, which administers Lifespan Respite WA.

    Ways to pay for respite and find respite providers

    If a family will pay directly for respite services, they can find respite providers online. Here are some ideas to start a search:

    • “Adult Day Services Washington State”
    • “After-school programs children with special health care needs Washington State”
    • “In-home care agencies near me”

    Another way to find a respite provider is to connect to a website managed by SEIU 775:  The Service Employees International Union is for independent service providers who have a collective bargaining agreement with Washington state’s Department of Social and Health Services (DSHS). This is one way to find an independent respite worker (usually for in-home care) that meets WA State qualifications for the work.

    Care.com is a private, online service connecting respite or personal care workers with potential care recipients and their families. Families are on their own to follow up on an individual worker’s qualifications, references, and background, although some listings will show someone has passed a background check.

    If a care recipient is eligible for respite through private medical insurance, the insurance company will list approved providers or caregivers may call their insurance company representative.

    Publicly funded respite programs also have lists of registered providers. Family caregivers who have respite funding through Medicaid or the Developmental Disabilities Community Services (DDCS) can use CarinaCare.com, an online tool to connect individuals with providers. A Who’s Who page describes the provider’s qualifications.

    Lifespan Respite WA vouchers can help fund respite services

    Lifespan Respite WA provides information about how to apply for a voucher. Vouchers are “mini-grants” for unpaid caregivers supporting a family member, friend or neighbor who has a special need or condition. The vouchers, up to $1,000 per qualifying household, can be used with any of the registered Lifespan Respite Providers listed on their website.

    To qualify, the caregiver or care recipient can not be enrolled in a Medicaid respite or personal care program through DDCS (formerly DDA). (Exceptions are made for people on a waiting list and not scheduled to get respite services within 30 days of applying for a Lifespan voucher.) Additionally, a caregiver must:

    • Not be paid to care for the care recipient
    • Give 40 or more hours a week of care
    • Not get respite from any other program
    • Live in Washington State
    • Can’t afford to pay privately for respite care

    Who qualifies for free or low-cost respite care?

    In Washington State, eligibility for free or low-cost respite services may depend on a person’s circumstances or the category of disability.

    • Seniors and Adults with Disabilities
      • Seniors 65 and older who meet functional and financial eligibility can get a variety of services through Department of Social and Health Services Home and Community Services Administration (HCSA).
      • Unpaid caregivers of adults 55 and older who meet functional and financial eligibility can get respite care and other needed support services like caregiver education, support groups, housework and errands and other services.
      • The easiest way to learn about services and eligibility is to contact the county or regional Area Agency on Aging, which administers many of HCSA’s services. They are also listed at Washington’s Community Living Connections/waclc.org.
    • People with Developmental Disabilities (All Ages) and Children with Disabilities
      • Children and adults with developmental disabilities who meet eligibility criteria for Developmental Disabilities Community Services (DDCS) might get respite, personal care, assistive technology, community engagement support, and other services provided through Home and Community-Based Services and Community First Choice (CFC).
      • Children with disabilities who are not DDA eligible may still get CFC through DDA.

    How to apply:

    Foster care respite

    Respite care is available for foster parents licensed by the Division of Licensed Resources (DLR), a Tribal agency, or a Child Placing Agency (CPA). Unlicensed relative caregivers or those determined to be “suitable person placements” also can get respite, as can caregivers assigned by the Department of Children, Youth, and Families (DCYF) or a Washington Tribe. 

    Child Specific Respite (CSR) is linked directly to the medical, behavioral, or special needs of an individual child. CSR authorizes respite relief to families providing care to a child placed by DCYF on a case-by-case basis, consistent with the written service plan for the child.

    Veterans and Military Family Caregivers

    Veteran’s families may qualify for respite through the Program of Comprehensive Assistance for Family Caregivers (PCAFC), operated by the United States Department of Veterans Affairs. PCAFC offers up to 30 hours of respite: Program options, eligibility and the application process are described in a downloadable booklet published Oct. 1, 2020.

    Active-duty military and Activated Reserve or National Guard family caregivers may be eligible for respite care through TRICARE, the military healthcare system. Here are resources for military family caregivers:

    • Respite care for primary caregivers of service members injured in the line of duty can be found on the TRICARE website.
    • Extended Care Health Option (ECHO) can be a respite resource for caregivers of non-military family members.
    • Some installations have respite funding available when the care recipient is enrolled in the Exceptional Family Member Program.
    • Coast Guard family caregivers have the Special Needs Program which may offer respite or funding for respite:
    • Coast Guard Mutual Assistance has Respite Care Grants available for eligible Coast Guard clients who have responsibility 24 hours per day to care for an ill or disabled family member who lives in the same household.