Family & Caregivers Archives - Page 2 of 2 - Family to Family Health Information Center

Financial Resources

Government subsidized healthcare may not be able to cover all expenses that families accumulate when they are taking care of a child with complex healthcare needs. There are ways to appeal for more funds and outside funding resources that are available.

Health Savings Account (HSA)

A type of savings account that lets you set aside money on a pre-tax basis to pay for qualified medical expenses. By using untaxed dollars in a Health Savings Account (HSA) to pay for deductibles, copayments, coinsurance, and some other expenses, you may be able to lower your overall health care costs. HSA funds generally may not be used to pay premiums. For 2020, if you have an HDHP, you can contribute up to $3,550 for self-only coverage and up to $7,100 for family coverage into an HSA. HSA funds roll over year to year if you don’t spend them. An HSA may earn interest or other earnings, which are not taxable. Health Savings Account at HealthCare.Gov

Shriners Hospitals

Provides specialized care for children with various special health care needs, regardless of the families’ ability to pay. You may ask for assistance with your bill at any time during your hospital stay or, throughout the billing process. For more information, contact your nearest Shriners’ Hospital.

Shriners Hospitals for Children — Spokane

Shriners Hospitals for Children — Portland

Ben’s Fund

The Ben’s Fund Mission is to provide support to children and young adults with autism through financial assistance and guidance. Ben’s Fund Autism Grant Application

Telecommunication Equipment Distribution (TED) Program

The Office of the Deaf and Hard of Hearing (ODHH) operates a Telecommunication Equipment Distribution (TED) program. The TED Program supplies specialized telecommunication equipment to people who have a hearing loss or speech disability so that they can use the telephone independently. Washington State residents ages 4 and up who are deaf, hard of hearing, late-deafened, deaf-blind or speech disabled are eligible to apply to receive free or low-cost telecommunication equipment.
Application for Telecommunication Equipment
Office of the Deaf and Hard of Hearing

Reduced Cost Services Guide

A booklet of products and services available in or near Washington state that are offered at reduced cost for people meeting certain income levels.

DSHS Reduced Cost Services Guide

Universal Service Programs

Houses Lifeline, a federal program that lowers the monthly cost of phone or internet service for low-income houses or people on tribal lands.

Get Connected to Phone or Internet Service

FEMA Assistance for Accessibility Items

FEMA can help in replacing adaptive or accessibility items damaged during a disaster.

Expanded Federal Disaster Assistance

Possibilities

Financial planning information from the Pacer Center, focusing on how to change a budget and review the options when a child is diagnosed with a disability.

A Financial Resource for Parents of Children with Disabilities.

Denial of coverage Resources

The Office of the Developmental Disabilities Ombuds (DD Ombuds) is a private, independent office focused on improving the lives of persons with developmental disabilities in Washington State.

Washington State Office of the Insurance Commissioner has resources if insurance is denied, if you wish to make a complaint, or have an insurance problem.

Washington State Office of Labor and Industries has information on worker’s compensation, sick leave, and worker’s rights.

Emergency Preparation

If an emergency happens, do you have a plan for yourself or loved ones with disabilities?

Being prepared means planning ahead. To be ready for an emergency means you are informed, have an emergency plan, and you have a survival kit.

Be informed

Do you know what natural disasters can happen in your area? How does your local community inform public of emergency? Do you know your community’s evacuation plan or emergency shelters? One of the ways the Red Cross encourages people to be informed is to sign up for local alerts to your phone or email. The Emergency Alert System (EAS) state plan includes a list of radio stations by area you can tune into for emergency alerts. FEMA has their own mobile app that alerts users to emergencies, gives the locations of recovery centers, and provides emergency kit checklists. The Red Cross’ Be Informed page also lists important information to keep you safe when a disaster happens.

Make a plan

Part of making a plan is creating escape routes accessible for everyone within your household and finding a meeting spot. If you’re making a plan that includes someone that uses a wheelchair, the escape route must be wheelchair accessible.

Your plan should include what steps to take before, during and after a disaster. Confirm that everyone is on the same page. The Red Cross includes a 3 step process to create your emergency plan, as well as some templates to write your plans down.

The 3 steps are:

With your family or household members, discuss how to prepare and respond to the types of emergencies that are most likely to happen where you live, learn, work and play.
Identify responsibilities for each member of your household and how you will work together as a team.
Practice as many elements of your plan as possible.

Build a kit

Some of the things you may consider when building a disaster kit are;
having adequate food and water supply, a first aid kit, extra clothing, sanitation, flashlight, batteries, medications, sleeping bags, and copies of important documents are a few of the necessary items to include in your kit.

Build a Kit is a baseline place to start when thinking about what you would add to your emergency kit. There are additional items FEMA suggests adding to your kit. For families that have specific dietary restrictions or allergies, Amazon and Legacy Foods have products that are gluten-free and other specially made for other dietary needs. Other options for pre-assembled emergency preparation supplies include Emergency Kits.com, Stealth Angel, and The Red Cross.

Emergency Preparedness for People with Disabilities

The Red Cross has a page dedicated to disaster safety for people with disabilities. This page walks you through the process of preparing for an emergency as a person with special needs. From things like creating your own personal assessment, to registering with your local emergency assistance program.

Emergency Preparedness Tool Kit for People with Disabilities is a comprehensive downloadable booklet complete with checklists and resources to help you prepare.

Disaster Readiness Resources for People with Disabilities and Their Families from the Family Network on Disabilities has information in English and Spanish.

Centers for Disease Control and Prevention

Caring for Children in a Disaster

“Planning is key. It is important for families to have an emergency care plan in place in case a public health emergency like a natural disaster, act of terrorism, or disease outbreak occurs.”

Ready.gov

Individuals with Disabilities

“How might a disaster affect you? Could you make it on your own for at least three days? After a disaster, you may not have access to a medical facility or even a drugstore, so it’s crucial to plan for the resources you use regularly, and what you would do if those resources are limited or not available.”

Disaster preparedness for children with special needs

Back-up Caregivers and Personal Emergency Response System
Children and Youth with Special Healthcare Needs in Emergencies
Early Childhood Disaster – Related Resources for Children and Families
Emergency Planning in a Pandemic
Pediatric Disaster Preparedness Toolkit
Psychological First Aid Online Course
Ready.gov for Kids
Sesame Street for Parents: Emergency Preparation Toolkit

Apple Health and Medicaid

Medicaid and Apple Health

Within Washington State, Medicaid is known as Apple Health. Washington Apple Health applications are available year round. Visit the Health Plan Finder or call 1-855-923-4633 to enroll.

Eligibility for Apple Health for Children:

Free or low-cost coverage is available
Children of public employees with access to health insurance coverage under the PEBB or SEBB programs are not eligible for Apple Health for Kids with premiums
Low-cost coverage (Apple Health with premiums) is only available to children who are uninsured.
Income requirements for free coverage:

Eligibility for Apple Health for Adults:

Are age 19 through 64.
Have annual household income at or below the Medicaid standard (see income chart below).*
Are a U.S. citizen or meet Medicaid immigration requirements. (Washington residents from the Republic of Palau, the Republic of the Marshall Islands and the Federated States of Micronesia)
Are not entitled to Medicare.

How to Apply for Medicaid

Review adult and/or child income eligibility requirements.
Read the Eligibility Overview to determine if Apple Health is the best fit for you and your family.
Create an account on Washington Health Plan Finder.
Collect and enter information into the Washington Health Plan Finder application, WAPlanfinder Mobile App, downloadable paper form, or call the Washington Healthplanfinder Customer Support Center at 1-855-923-4633.
Review the five different Integrated Health Care Plans that are responsible for Medicaid in Washington, not all of which may be available in your location.
If you need further help, contact a free Health Plan Navigator.

Navigating through Apple Health

Apple Health (Medicaid) Eligibility Factors – A video dealing with income verification issues
Washington Apple Health for Children in Foster Care – All foster children and youth in Washington are given health care through Coordinated Care
Washington Apple Health (Medicaid) Eligibility – A video on how Apple Health determines income
Washington Apple Health (Medicaid) Eligibility – A video addressing citizenship, immigration, and Medicaid

MCOs Available Through Apple Health

Amerigroup Washington
Community Health Plan of Washington
Coordinated Care of Washington
Molina Healthcare of Washington
UnitedHealthcare Community Plan

Family Support

There are many family supports that exist throughout the state to aid, educate, and create a community for families that have a member that has complex health care needs.

Peer and Support groups

Dads M.O.V.E. seeks to provide every parent/caregiver (especially dads) with the tools, support, and training needed to be fully engaged in the recovery of their children. Hosts a bi-weekly Dad’s Support meeting.

Families of Color Seattle programs include parent groups, community resources and events, and racial equity consulting.

Parent Trust for Washington Children creates lasting change and hope for the future by promoting safe, healthy families and communities.

Family Support Programs

Lifespan Respite WA offers support in the form of a voucher (financial award) for unpaid caregivers who support a family member, friend, or neighbor who has a special need or condition. The voucher is used to pay for services or programs that allow the caregiver to have respite, or “short breaks”. Lifespan Respite vouchers are for short-term respite. Respite care takes many forms, and care services may include:

In-Home Services
Recreation
Day or Overnight Camps
Day Services
Education/Classes
Retreats
24-hour care

Learn more about the voucher program and find out if your family may be eligible.

Online Family Resources

Keep Connected – Ideas, activities, and experiences to help build strong family relationships

Making Friends Where You Live – A Toolkit for Building Friendships Between People With and Without Disabilities

Mommies of Miracles – Support group for mothers of children who have medical complexities, life-limiting conditions, or developmental disabilities

Parent Help 123 – Information about accessing benefits, child development, and special needs

The Association for Successful Parenting (TASP) – Supports families where parents have learning difficulties.

The Arc of Washington – Provides resources for people with intellectual and developmental disabilities and their families, including the statewide Parent 2 Parent program.

Watch Me Grow in Washington State – Get more health and safety information for your child

Articles on Family Support and Self-Care

Climbing the Emotional Caregiving Mountain
A mother’s reflection on raising a child with complex health care needs.

Communities of Grieving

Self-Care is Critical for Caregivers with Unique Challenges
A helpful article from the PAVE website written from a parents’ perspective on how to practice self-care as a caregiver.

Self-Care for Caregivers: How Special Needs Families Recharge
An article on self-care for caregivers written by Angela Nelson, the executive director of Family and Clinical Services, Rethink.

What if My Child is Not Capable of Representing Him or Herself? Guardianship May be Needed
Information on Guardianship, Conservatorship, and the Age of Majority

Leadership and Advocacy

Lived experience is a qualification that no amount of training or education can replace. Advocacy and leadership from family members of children with complex medical issues is both needed and wanted by many groups at the local, state, and national level.

About Family Leadership

The Importance of the Family Voice
As a family member, it is important that your voice is heard at the table whenever anything having to do with services for children with disabilities is being discussed.

Tips for Emerging Family Leaders
Many families bring leadership skills to the table because of their experiences at work, other service in the
community, or simply the skills and traits that they have developed through life experiences.

How People with Complex Health and Social Needs Can Become Advocates for Change
By Mia Matthews, President/Executive Director, CHANs Promise Foundation; 2019-2020 National Consumer Scholar through the National Center for Complex Health and Social Needs

Learning to Advocate

Learning to Advocate for All Children – As parents and caregivers, learning to effectively advocate for their children can be a difficult learning curve. But once this is achieved, family leaders can reach out beyond their own family and advocate on behalf of many children who have special health care needs. While it may be daunting to step into that larger world, family voices are one of the most powerful forces for change in our society. Here are some tools and organizations that can help you step up your advocacy game.

The Parent Leadership Training Institute (PLTI) is a program of Washington Family Engagement. The PLTI is a 12- week online course that teaches parents, community members, and professionals working with families to understand systems and develop civic, leadership, and public speaking skills.

Other advocacy training and advocacy opportunities are available on our calendar.

Washington State Family Led Organizations

Dads M.O.V.E. – Seeks to provide every parent/caregiver (especially dads) with the tools, support, and training needed to be fully engaged in the recovery of their children.

Fathers Network – Works by connecting men with each other and with resources and information, by training men to tell their story and advocate for change, and by working to promote inclusion.

Washington Family Engagement – Fosters social transformation by supporting the development of multigenerational leaders from diverse backgrounds to become actively engaged in schools and communities in Washington State.

Washington State Community Connectors – WSCC seeks to continue representing and strengthening their family-led membership by providing opportunities to support and encourage collaboration efforts within the statewide network and with community and system partners.

Washington State Parent to Parent (P2P) – Helping Parent volunteers have completed a training program and are available to provide support and information to other parents. All information is kept confidential. There is no cost for this service.