Tag: caregiver

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

Posted on by Barb Koumjian

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.

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

Posted on by Barb Koumjian

There are many active organizations working on research to treat and cure Parkinson’s Disease and support individuals living with PD and their caregivers. At Lifespan Respite WA, we focus on caregivers. Our team gathered resources from these organizations to help caregivers in their lives and their caregiving work.

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

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:

The 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.

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 https://www.parkinson.org  + https://www.parkinson.org/espanol

Helpline: 1-800-473-4636 (national)

“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

From the Pacific Northwest Chapter: list of support groups (for in-person, call first)

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

Respite Offers a Break for Caregivers and Those They Support

Posted on by Nicol Walsh

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.

Surrogate Parents Support Unaccompanied Students in Special Education

Posted on by Nicol Walsh

A Brief Overview

  • 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).

Full Article

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.