Category: Family & Caregivers

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 Chart

CDC Milestone Tracker App

When Parents Should Be Concerned About Their Child’s Behavior

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.

Preemie Care  Non-profit organization dedicated to supporting families of infants born preterm through education, support, and resources.

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

Helping Your Child Feel Connected to School  Ideas to ensure your child feels comfortable in school

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 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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Where to Start: Organizations That Parents and Caregivers can go to for Help and Support

When a new diagnosis is given or a new problem arises, many parents are at a loss for how to start helping their child. Thankfully, there are many organizations in Washington state that are ready to help families in a variety of different specializations. Here are some places to start.

For general parenting concerns, Parenting Trust for Washington Children provides education, advice, and resources for a variety of concerns. Parent Help 123 is able to help caregivers find benefits and services available to them and their families. They run a hotline at 1-800-322-2588. Families of Color Seattle (FOCS) connects families, caregivers, and children of color through peer-led parent support groups.

For families who have children are youth with special needs, the Arc of Washington advocates for the rights and full participation of all people with intellectual and developmental disabilities. Visit the Statewide Parent to Parent (P2P) website to see the local chapters of the Parent-to-Parent program.  The program matches families to those who have been in similar situations, to aid and support them in their journeys.  PAVE provides support, training, information, and resources to empower and give voice to individuals, youth, and families impacted by disabilities through several programs, including Person-Centered Planning, STOMP program for military families, and health information program.  Open Doors for Multicultural Families provides culturally and linguistically relevant information, services, and programming to culturally and linguistically diverse families of persons with developmental and intellectual disabilities. The Washington Autism Alliance (WAA) extends access to healthcare, education and services for people with autism spectrum disorders (ASD’s) and related intellectual and developmental disabilities (IDD) in Washington State.

For families working to get their child a proper education, contact PAVE’s Parent Training and Information (PTI) program, which helps family caregivers, youth, and professionals with questions about services for children and young people with disabilities, especially those concerting special education.

For those with children and youth with behavioral health issues, including mental health and substance abuse problems, the Center Of Parent Excellence (COPE Project), run by A Common Voice, was developed to provide a pathway for Washington State parents who are accessing and navigating the system to have independent peer support to ease their journey. For fathers, Dads M.O.V.E. was created to strengthen the father’s role in raising children with behavioral health needs through education, peer support and advocacy.

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Opportunity for Families: Promoting Equitable Access to Language Services for Families of CYSHCN

Family Voices is recruiting 8 diverse multilingual people to participate in the project advisory committee (PAC) for our new project to Promote Equitable Access to Language Services (PEALS) for families of CYSHCN. The PAC will lead the project by identifying community needs, and reviewing and testing materials to be sure that they work well for English Language Learners.

The PEALS project will improve the quality and use of language access services in the healthcare setting for families with limited English proficiency.

Recruitment Criteria

Eligible participants will be:

  • Diverse youth or family members of CYSHCN with limited English proficiency (LEP) who speak more than one language, (Chinese, Arabic, Spanish etc.) or
  • Allied health workers or health care providers who speak more than one language, (Chinese, Arabic, Spanish etc.) or
  • Community health workers who speak more than one language (Chinese, Arabic, Spanish etc.)

Compensation

  • PAC members receive $300 for each meeting they participate in.

If you are interested in participating, please complete the application form by November 30, 2022.  

The goal of this project is to improve the quality and use of language access services in the health care setting for families with Limited English Proficiency. Family Voices and our partner at the American Academy of Pediatrics will work alongside families with lived experience to develop educational tools and strategies for families, community health workers, and health care providers to improve the way they use language access services.
If this project interests you, please complete the application below to be considered as a member of the Project Advisory Committee (PAC). This committee will help identify community needs and review and test materials to be sure that they work well for English Language Learners.
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Special Education Legal Clinic Registration

To schedule an appointment, go to Special Education Clinic Registration

Interpreter Services Available

The purpose of the clinic is to provide a 30-minute consultation (for those who qualify) with a special education attorney.

The clinic offers free, limited legal advice and referrals for special education issues. The clinic is not meant to be a comprehensive consultation, if you need a more in-depth meeting, please contact WAA for a full intake screening.

Special Education issues related to your student’s Individual Education Plan (IEP) and/or 504 Plan including but not limited to:

  • Child Find
  • Qualifying for services
  • Accommodations and Modifications
  • Behavior supports
  • Discrimination
  • Discipline
  • Harassment, Intimidation, and Bullying
  • Accessing interpretation services

Click here to register for a date on their calendar

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Enrollment Open for Spring 2022 Online Parent Leadership Training Institute – English and Spanish

The Parent Leadership Training Institute (PLTI) is a free, 12 week, 6 hours per week leadership course for parents, guardians, grandparents, community members and anyone working with families. The goal of the PLTI is to increase community engagement in civic matters, public education and youth development. It is held at Everett Community College in the spring and fall of every calendar year, but is currently offered only online during the COVID-19 pandemic.

The PLTI is led by credentialed facilitators who are certified by the National Parent Leadership Institute (NPLI) after completing intensive training. Facilitators are required to:

  • understand civics and the democratic process;
  • have knowledge about state and community policy issues;
  • embrace diversity;
  • understand the need for parent engagement in the community;
  • see parents/guardians/community members as community assets;
  • be inspiring!

They are accompanied by guest presenters such as business leaders, elected officials, service/health providers, school district officials and guided by a Civic Design Team formed by school and community leaders.

The Children’s Leadership Training Institute (CLTI), a free leadership course for children ages 6 – 12, is offered to the children of those enrolled in the PLTI.

PLTI Curriculum

The PLTI curriculum is an in-depth program centered on the belief that democracy is the bridge linking communities, families, diverse cultures and races. The curriculum is broken down into two sessions which paves a path to a greater understanding of our role in the community and the systems that are in place. It is a catalyst for self-reflection, awareness, analysis and transformation. We believe that everyone can be empowered to improve their lives and the lives of others.

Learn more and Sign Up Here!

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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) (Vietnamese) (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

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

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.