Category: Family & Caregivers

Positive Changes through Diabetes Parent to Parent and Diabetes Taskforce 

Summary  

The Center for Disease Control (CDC) published a study examining the number of young people under 20 with Type 1 Diabetes from 2002 to 2017. The researchers’ review of the data showed an increase in the diagnoses of Type 1 Diabetes. The researchers concluded that if the rate of new diagnoses continues to increase by the year 2060, the Type 1 Diabetes cases would increase by 65%. The study predicted higher increases in Black, Hispanic, or Latino, Asian, Pacific Islander, and American Indian or Alaska Native young people. CDC responded to these results as a call to action for health equity. Washington state responded to the CDC’s call to action by developing a Type 1 Diabetes work group. 

This article includes: 

  • A History of the creation of the Type 1 Diabetes Work Group 
  • Work Group Progress 
  • Future Direction 
  • Current Local Resources 

History of the Type 1 Diabetes Work Group 

In 2022, in response to a documented increase in the number of new diagnoses of Type 1 Diabetes (T1D) in children and youth in the state, and an increase in hospital admissions and near fatalities related to T1D complications, the Type 1 Diabetes Work Group was founded in Washington State. The goal of the Type1 Diabetes Work Group was to provide more support to the families of children with Type 1 Diabetes. The group includes parents, advocates, and medical professionals.  

The work group gathered information from professionals who treat patients with T1D to determine their priority needs. Twenty-two (22) healthcare professionals from around the state responded to the Work Group’s survey and identified these needs: 

  • More clinical support for the psychosocial complexity among youth with Type 1 Diabetes. 
  • Increase in mental health care providers familiar with diabetes. 
  • Community-based support groups. 
  • Financial resources and improved insurance coverage with no prior authorization. 
  • Better transition to adult care for young adults with diabetes. 

Families across the state with Type 1 Diabetes were asked to attend listening sessions and identify their needs. Thirty families participated in the Type 1 Diabetes listening sessions and identified their needs: 

  • More education on Type 1 Diabetes for school staff, including school nurses, office staff, and faculty. 
  • Childcare centers and preschools whose staff are trained to support children with Type 1 Diabetes. 
  • Understanding how to navigate insurance. 
  • Transportation and increased access to local endocrine clinics. 
  • Trauma-informed and compassionate care. 

The Type 1 Diabetes work group used information from both groups to develop their goals. 

Work Group Progress 

The work group has actively made Type 1 Diabetes support accessible to families. They created Diagnosis: Diabetes – Family to Family Health Information Center, a dedicated resource for sharing local and national resources on diabetes. 

They developed a Statewide T1D Coordinator role in partnership with PAVE and P2P, funded by the Washington Department of Health. The need for a Type 1 Diabetes information hub where families could easily go to get information on one page resulted in the creation of the Washington Family to Family Type 1 Diabetes Community Board. A T1D Family Support Program was established, providing parent-to-parent support services. An online parent support group is a planned expansion for this program. A T1D Teen Connect Support group was started and continues to serve teens. The group is led by a young adult volunteer with Type 1 Diabetes who can relate to the teen’s experiences. 

The Work Group worked with the Office of Superintendent of Public Instruction (OSPI), Washington’s state education agency, to develop Guidelines for Care of Students with Diabetes to align with the American Diabetes Association’s Helping the Student with Diabetes Succeed: A Guide for School Personnel. OSPI is the primary agency in charge of overseeing K-12 education in the state of Washington. OSPI allocates education funding for resources to support the education of students. to support the education of students. 

The Washington State Department of Health (DOH) created an eating disorder handout for healthcare personnel, including diabulimia, an eating disorder associated with Type 1 Diabetes.  A person with Type 1 Diabetes reduces or stops taking their insulin as a means of losing weight. This can have serious health consequences as everyone needs insulin to live. 

The group has also started improving the managed care organization referral process for families with children with Type 1 Diabetes. They created a poster for health care offices and social media to identify T1D new-onset symptoms.  

Future Goals: 

  • Building Washington State data on diabetes. 

Local Resources 

Washington Family to Family Type 1 Diabetes Community Board Padlet contains supports, resources, upcoming social events, workshops, and what is new in the news for diabetes. 

Seattle Children’s Hospital offers a diabetes clinic, support groups, education, workshops, and everyday resource guides and checklists, such as a travel checklist. 

Camp Leo is for children and young people with Type 1 Diabetes. Registration for the children’s and young people’s camp is open. Family weekend camp is in the fall. Registration for the family weekend camp is currently accepting applications. 

Resources Included in the article above: 

American Diabetes Association’s Helping the Student with Diabetes Succeed: A Guide for School Personnel 

Diagnosis: Diabetes -Family to Family Health Information Center 

Guidelines for Care of Students with Diabetes 

Managed Care Organization Referral Process 

T1D Family Support Program 

T1D Teen Support Group 

Ages and Stages in Children’s Health

Articles, resources, and organization to help families during the various stages of a child’s life.

Prenatal:

Articles:

Genetic Testing: Parents Face Many Choices

Things I Wish I Knew on Folic Acid

Websites:

Care Net of Puget Sound  Help for individuals seeking support during pregnancy

Healthy Children  Information and resources to help you prepare for the baby and life as a parent

Mother to Baby  Evidence-based information for mothers about medications and other potentially dangerous exposures to mother and child during pregnancy

Pregnancy Aid  Free, confidential aid for women and families

Birth to 3

Tools:

CDC Milestone Tracker App

Website:

A Step Ahead  A home-based therapy and educational services, including speech, physical and occupational therapies and special education

Birth to Three Developmental Center  Birth to Three Developmental Center is a private non-profit child development program. We work with children from birth to age three and their families

Early Childhood Transition Guidebook (Spanish Version Available Here)  What You Need to Know Before Your Child’s Third Birthday

Healthcare Services and Supports  Find information about first steps, including Maternity Support Services (MMS), Infant Case Management (ICM), and Childbirth Education (CBE)

Healthy Children  A comprehensive website that walks you through all the milestones and skills your baby should be reaching by each age including: physical skills, social skill, and sensory milestones.

La Leche League  Help mothers worldwide to breastfeed through mother-to-mother support, encouragement, information, and education, and to promote a better understanding of breastfeeding as an important element in the healthy development of the baby and mother.

What is the Difference Between an IFSP and an IEP?  (Spanish Version Available Here)  Understanding the transition to an IEP once a child turns three

Zero to Three  Information on early childhood development and parenting advice

4 to 6 (Pre-School):

Healthy Children  The preschool page of Healthy Children walks you through the different milestones and skills your child should be reaching by this age; Physical skills, social skills, and cognitive thinking skills.

How to Prepare Your Child with Disabilities for Kindergarten: Tips for Parents (Spanish Version Available Here)  How to use the IEP Team to Plan for Success

Making the Move from Preschool to Kindergarten (Spanish Version Available Here)  A guide for parents of 4- and 5-year-old children who receive Preschool Special Education Services.

School Aged Youth:

Action Plan  A worksheet to complete with your high-schooler for determining what classes take and skills to work on.

Extracurricular Activities and Students with Disabilities (Spanish Version Available Here)  Information on how to incorporate sports and clubs into a child’s IEP

Making the Move from Elementary to Middle or Junior High School  Transition Tips for Parents of Students with Disabilities

Monitoring Your Teen’s Activities  What parents and families should know about setting boundaries

Parent Help 123  Information on some important preparations when getting a child ready for school

PAVE  Articles and Parent to Parent help on raising a child with complex healthcare needs.

Skills for Independent Living: Is it “Public” or “Private?”  Ideas on teaching your teenager what information is to be shared and what is best kept private

Skills for Independent Living: Parents Help Build Social Skills  Seven tools for improving the social skills of teenagers with disabilities

Skills for Independent Living: Personal Care Skills  Conversations about self-care are critical to your youth’s health and safety – here are some suggestions

Talking with Your Teens about Sex  Advice about going beyond “The Talk”

Ten Tips That May Help Your Child’s Transition to Adulthood  As you and your youth plan for the future, consider these tips for a successful transition

Transition to Adulthood: Where Do We Start?  The transition your son or daughter will make from being a child to becoming an adult member of the community is an important journey, one that requires a plan to pave the way to a successful future

Transition to Adulthood: Who Plans and Why  The special education transition planning team develops the Individualized Education Program (IEP) for your child

The Transition to Independent Living: What Parents Can Do Now  Skills necessary to living independently and possible living situations for youth leaving home

What Is Self-Determination?  Information on self-determination for individuals with disabilities and their families.

What Youth Need to Know if They Are Questioned by Police  Tips for parents to prepare their youth with a disability

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:

  1. 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.
  2. Identify responsibilities for each member of your household and how you will work together as a team.
  3. 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 (including in Spanish)

Developmental Disabilities Administration

About the Developmental Disabilities Administration (DDA)

The Washington State Developmental Disabilities Administration (DDA) is responsible for many of the services available for individuals with developmental and intellectual  disabilities and are responsible for administering many of the Medicaid waivers that provide vital services to families who have members who have a developmental disability. Applying to DDA can be a long process, but most families, especially those who are on Apple Health or Medicaid, will need to go through this process in order to receive these services they require, such as respite, physical therapy, behavioral health help, and stabilization services.

The first, and often most laborious, task in receiving services from DDA is receiving an official diagnosis. This must be done before the individual with the developmental disability is 18 years old. The developmental disability must be expected to continue indefinitely and constitute a substantial limitation to the person. Washington State determines these conditions as:
“Intellectual Disability, Cerebral Palsy, Epilepsy, Autism, or another neurological or other condition closely related to an intellectual disability or that requires support similar to individuals with intellectual disabilities.”

Only a medical professional can officially diagnose a disability, meaning that a doctor or psychiatrist needs to be consulted. While some of the aforementioned conditions are diagnosed in one or two visits, some can take years and a variety of specialists to diagnose.  Some of the cognitive tests to prove eligibility include those that can be administered in school by a psychologist or through a medical provider. They include: Stanford-Binet, Wechsler Intelligence Scales (WISC), Differential Abilities Scale (DAS), Kaufman Assessment Battery for Children (K-ABC), Das-Naglieri Cognitive Assessment System (CAS), Woodcock Johnson Test of Cognitive Abilities (WJ), and Reynolds Intellectual Assessment Scales, 2nd Edition (RIAS 2). The specific test used may change overtime, so do check with the latest eligibility requirements from the DDA. Different conditions are eligible for DDA support during different developmental periods. Support for babies, toddlers, and children with developmental delays are available for individuals up to a child’s 10th birthday. Individuals aged four and older with any other condition connected to intellectual disabilities are eligible for DDA services. For a full list of supported conditions, age ranges supported, and acceptable tests for diagnosis, visit the DDA site on eligibility.Once a diagnosis is official, several forms must be filled out and returned to the DDA to be approved for services, which can be viewed at the DDA eligibility website. In particular, the Request for DDA Eligibility Determination contains most of the important questions, and can be reviewed in advance of gathering information to start the DDA process.  For more information on filing the right paperwork, view PAVE’s DDA Access Eligibility video about finding all the forms you need to submit. Informing Families also has a video about Applying for DDA.

To Apply for DDA assistance:

  1. Review the Eligible Conditions With Age and Type of Evidence to check eligibility.
  2. Fill out a Request for DDA Eligibility Determination.
  3. Complete the Consent Form.
  4. Agree to the DSHS Notice of Privacy Practices for Client Medical Information.
  5. Submit all requested information to your local DDA office.

For help and information from the DDA, call:

  • 1-800-462-0624 for residents of: Adams, Asotin, Benton, Chelan, Columbia, Douglas, Ferry, Franklin, Garfield, Grant, Kittitas, Klickitat, Lincoln, Okanogan, Pend Oreille, Spokane, Stevens, Walla Walla, Whitman, and Yakima Counties
  • 1-800-788-2053 for residents of: Island, King, San Juan, Skagit, Snohomish, and Whatcom Counties
  • 1-800-248-0949 for residents of: Clallam, Clark, Cowlitz, Grays Harbor, Jefferson, Kitsap, Lewis, Mason, Pacific, Pierce, Skamania, Thurston, and Wahkiakum Counties

Outside Assistance with DDA eligibility

ARC Parent Coalition

Informing Families

PAVE

Pierce County Coalition for Developmental Disabilities (PC2)

Articles about DDA

Applying for DDA Services in Washington DDA Eligibility Overview

DDA 101: Information, Sources, and Resources

How to Prepare for a DDA Assessment

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.

Medicaid Waivers

What Are Medicaid Waivers?

Medicaid Waivers enable states to come up with ways to use Medicaid funds beyond the traditional hospital and long-term care facilities. This creates opportunities for disabled individuals to stay in their homes or in their communities, while receiving services on par with those available in a hospital or long-term care facility. Waivers have strict criteria, only being available to certain individuals who are on Medicaid. Waiver programs are considered short-term, with a life of up to five years, but can get renewed if they are found to be effective.

How to Apply for Waivers

The waivers are administrated by either the Developmental Disability Administration (DDA) or the Aging and Long-Term Support Administration(ALTSA). If you have found a waiver program that you would like to be a part of, contact or fill out an application with the applicable agency. You can only be enrolled in one waiver program at a time.

Medicaid and Long-Term Care Services for Adults (Spanish) (Chinese) (Vietnamese) (Russian)

Home and Community Based Waiver Services from the DDA

Request for Enrollment in DDA Waiver (Spanish) (Chinese) (Korean) (Russian)

Available Waivers

Descriptions below are provided by medicaid.gov

Children’s Intensive In-Home Behavioral Support (CIIBS) (40669.R02.01) administered by DDA
FAQ Available Here
Provides respite, assistive technology, behavioral health stabilization services-crisis diversion bed services, behavioral health stabilization services-positive behavior support and consultation, environmental adaptations, nurse delegation, positive behavior support and consultation, risk assessment, specialized clothing, specialized medical equipment and supplies, staff/family consultation and training, therapeutic equipment and supplies, transportation, vehicle modifications for individuals with autism, ID, DD ages 8 – 20

WA COPES (0049.R08.00) administrated by ALTSA
Provides adult day health, adult day care, client support training & wellness education, community choice guiding, community support: goods and services, environmental modifications, home delivered meals, skilled nursing services, specialized medical equipment and supplies, transportation for aged individuals ages 65 – no max age and physical and other disabilities ages 18-64

Core Waiver (0410.R03.04)administered by DDA
Provides community inclusion, individual supported employment/group supported employment, prevocational services, residential habilitation, respite, behavioral health stabilization services-specialized psychiatric services, specialized psychiatric services, behavioral health stabilization services-behavioral health crisis diversion bed services, behavioral health stabilization services-positive behavior support and consultation, chemical extermination of bed bugs, community guide, community transition, environmental adaptations, individualized technical assistance, occupational therapy, physical therapy, positive behavior support and consultation, risk assessment, skilled nursing, specialized medical equipment and supplies, speech, hearing, and language services, staff family consultation and training, transportation, wellness education for individuals with autism, ID, DD ages 0 – no max age

Individual and Family Services (1186.R01.00) administered by DDA
Provides respite, behavioral health stabilization services – specialized psychiatric services, specialized psychiatric services, assistive technology, behavioral health stabilization services – crisis diversion bed services, behavioral health stabilization services – positive behavior support and consultation, community engagement, environmental adaptations, nurse delegation, occupational therapy, peer mentoring, person-centered plan facilitation, physical therapy, positive behavior support and consultation, risk assessment, skilled nursing, specialized clothing, specialized medical equipment and supplies, speech, hearing and language services, staff/family consultation services, supported parenting services, transportation services, vehicle modifications, wellness education for DD individuals ages 3 with no maximum age

New Freedom (0443.R03.00) administrated by ALTSA
Provides personal assistance services, environmental and vehicle mods, individual directed goods/services and supports, training and educational supports, treatment and health maintenance for aged individuals ages 65 – no max age, physically disabled and disabled other individuals ages 18-64

Residential Support Waiver (1086.R01.00) administrated by ALTSA
Provides adult day health, adult family home specialized behavior support service, client support training and wellness education, enhanced residential services, expanded community services, nurse delegation, skilled nursing, specialized medical equipment and supplies for aged individuals 65 with no max age and physical/other disabilities ages 18-64

Basic Plus Waiver administered by DDA
Provides community inclusion, individual supported employment/group supported employment, personal care, prevocational services, respite, behavioral health stabilization services-specialized psychiatric services, specialized psychiatric services, behavioral health stabilization services-behavioral health crisis diversion bed services, behavioral health stabilization services-positive behavior support and consultation, chemical extermination of bed bugs, community guide, emergency assistance, environmental adaptations, individualized technical assistance, occupational therapy, physical therapy, positive behavior support and consultation, risk assessment, skilled nursing, specialized medical equipment and supplies, speech, hearing and language services, staff/family consultation and training, transportation, wellness education for individuals with autism, ID, DD ages 0 – no max age

Community Protection Waiver (0411.R03.03) administered by DDA
Provides individual supported employment/group supported employment, prevocational services, residential habilitation, behavioral health stabilization services – specialized psychiatric services, specialized psychiatric services, behavioral health stabilization services – behavioral health crisis diversion beds, behavioral health stabilization services – positive behavior support and consultation, chemical extermination of bed bugs, community transition, environmental adaptations, individualized technical assistance, occupational therapy, physical therapy, positive behavior support and consultation, risk assessment, skilled nursing, specialized medical equipment and supplies, speech, hearing, and language services, staff/family consultation and training, transportation for individuals with autism, ID, DD ages 18 – no max age

Medicaid Waiver Videos

Medicaid Waiver 101
Medicaid Personal Care

Applying for Medical Insurance

Looking for Healthcare

The Washington Health Benefit Exchange can help families and individuals find subsidized health care in their area. Existing customers can renew their coverage or change their plan.

The Health Insurance Marketplace Calculator provides estimates of health insurance premiums and subsidies for people purchasing insurance on their own in health insurance exchanges or “Marketplaces.”

Special Enrollment Period

Qualifying life events such as: having a baby, losing your health coverage, or getting married will allow you to enroll in healthcare outside of the enrollment period.  Details are available on the Washington Health Benefit Exchange website.

Real Person Enrollment Assistance

Trained navigators are available to personally guide you in enrolling in health and dental coverage.
Toll-Free: 1-855-923-4633
TTY/TDD: 1-855-627-9604
Enrollment Centers are located in Federal Way, Spokane, Yakima, Bellingham, Kennewick, Olympia, Seattle, Tacoma, Vancouver, Wenatchee, and Everett.

Outside Assistance

Several family groups are available to aid in the enrollment process

Parent help 123
Family navigators are available to help you understand the process of enrolling in health care, look at the plans, and help you enroll on the phone.
Toll-Free: 1-800-322-2588

Washington Autism Alliance and Advocacy
Legal supports around enrollment and coverage for families impacted by autism
Phone: 1-425-894-7231

National Disability Navigator Resource Collaborative (NDNRC)
The NDNRC website includes links that are disability specific, mental & behavioral health, and populations with special health care needs.

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.

Emergency Preparation for People with IDD Goes Beyond Having a Go-Bag

Families with individuals who have Intellectual and Developmental Disabilities (IDD) often have plans in place for natural disasters. Wildfires, earthquakes, and flooding are common concerns across Washington. Yet there are other, more mundane emergencies that also need to be planned for. Emergencies happen in almost every home at one time or another. If the emergency is with the individual with a disability, there are often procedures in place with the household as to how to proceed. These include having a go-bag, having a list of diagnosis, medications, and medical history on hand. But emergencies are not also so straightforward, yet it is still possible to prepare for them.

Sometimes the individual with a disability is alone when an emergency occurs, or the caregiver is incapacitated, with only the person with a disability around to help.  Under these stressful situations, many people will panic and be unable to help themselves or others, and those with and IDD are even more likely to react poorly to an emergency situation. One option is to have a personal emergency response system (PERS), sometimes known as medical alert system, for both the individual with an IDD and their main caregivers. This will allow for non-verbal communication with emergency services when the person with an IDD or a caregiver is having a medical emergency.  PERS are available to those on the Community First Choice Medicaid waiver and can otherwise be purchased by anyone.

Preparation is key to heading off potential disasters when emergencies happen. Experts recommend talking regularly to loved ones with IDD about how to deal with an emergency situation.  This can include discussing the importance of listening and following directions of caregivers and first responders. It can also take the form of drills, in the guise of make-believe.  Storytelling can be a wonderfully effective way of getting the message across, and several picture books are available to help children understand how to behave in an emergency.

First responders are increasingly being taught about how to deal with individuals with intellectual and developmental disabilities, but first responders displaying this knowledge cannot be counted on in an emergency. Individuals with IDD are more likely to be comfortable with first responders if they have interacted with them in the past in a comfortable environment.  Community events often have meet-and-greets with police or firefighters, which can be a fun place to introduce children to emergency personnel.  If the individual with a disability is able to regularly visit with first responders, they will be more likely to have a positive reaction to them during an emergency.

Washington State started issuing updated ID cards in 2022, which can now show that an individual has a developmental disability, is deaf or hard of hearing, or has another medical condition.  Not only will first responders be able to see an individual’s important medical information on their ID card, having the card will allow most law enforcement departments to see these designations when they look up individuals in the Department of Licensing system. These new ID cards can help first responders recognize that a person has a disability and act accordingly.

Primary caregivers can enlist the help of nearby friends and family in their emergency planning and can be recruited as an emergency caregiver.  Emergency caregivers need to be someone who is nearby, trustworthy, easily reachable, and has knowledge as to what the person with a disability needs to stay safe and cared for. They can be put on speed dial and the individual with an IDD can be taught how to contact them in emergencies.

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