Info & Resources

Click picture to go to P2P USA website
Click to link to our Washington State Parent to Parent public group page

“Thicker Than Water: Essays by Adult Siblings of People with Disabilities”

https://www.amazon.com/Thicker-Than-Water-Siblings-Disabilities/dp/1890627917 (click here)

Bound by blood, but not always by love, a sibling can be your friend or rival, defender or detractor–sometimes simultaneously! But what’s the impact on that bond when one sibling has a disability?

In this thought-provoking essay collection, thirty-nine adult siblings reflect on how their lives have been indelibly shaped by their relationship with a brother or sister with special needs. Edited by Don Meyer, creator of Sibshops and an expert on sibling issues, Thicker Than Water reveals both positive and negative aspects of growing up with someone who might have received the lion s share of his parents attention or who now requires extra support as an adult.

For more sibling support information go to website: www.siblingsupport.org

A Sense Of Fulfillment – A New And Different Sense Of Purpose

“I am the one who gets to go home feeling happy to be part of the ripple effect of so much good.”~~Bobbi Bjork (Clark County P2P)

 

Advocacy ATLAS: Accessible Tools for Leadership and Advocacy Success

Produced by Genetics Alliance in collaboration with National Family Voice and Parent to Parent USA. It contains more than 250 resources and tools for individuals with special needs and their families.

Association for Children with Down Syndrome (ACDS)

ACDS programs deliver on our mission statement – to serve individuals with developmental disabilities throughout their lifetime. Our programs encompass three broad age categories: Early childhood and preschool years, 5 years plus, and adult years.

Attention Deficit Disorder Association

(ADDA) Information, resources, articles, services, support groups and more for individuals with attention deficit disorder.

Autism Internet Modules (AIM)

AIM is designed to provide high-quality information and professional development for anyone who supports, instructs, works with, or lives with someone with autism.

Autism Project – WA Department of Health

Autism Spectrum Disorders are a group of developmental disabilities that can cause significant challenges in communication, behavior and social interactions. Typically appearing within the first three years of life, autism affects each individual differently. Early screening, diagnosis, and services are essential to get the best results for children with autism.

Autism Society of Washington State

The vision of the Autism Society of Washington is that every person with autism has the opportunity to achieve his/her fullest potential and be fully included in communities across Washington State.

Autism Speaks: Autism & Your Family

Fifteen Tips for Your Family – As a result of her work with many families who deal so gracefully with the challenges of autism, Family Therapist, Kathryn Smerling, Ph.D., offers these five tips for parents, five for siblings and five for extended family members:

Autism Speaks: School Community Tool Kit

A tool kit to assist members of the school community in understanding and supporting students with autism.

Autism Spectrum Connection

For individuals or family members wanting to learn more about autism or Asperger syndrome

Basic Health Information for WA

Washington State Health Care Authority

Booklets about prenatal diagnosis of a genetic condition

Lettercase booklets for expectant parents who’ve received a prenatal diagnosis of a genetic condition

Bookshare: Accessible Books and Periodicals for Readers with Print Disabilities

Bookshare makes reading easier. People with dyslexia, blindness, cerebral palsy, and other reading barriers can customize their experience to suit their learning style and find virtually any book they need for school, work, or the joy of reading.

Care Notebook Documents and Forms

Organizing your child’s health information not only helps you, but can help providers or other caregivers to better know and support your child. We spoke with parents to hear what they have learned about organizing all the paperwork, appointments, schedules and other information needed to care for their child.

NOTE: After 20 years serving families of children with special needs, due to a loss of state funding, the Center for Children with Special Needs has closed its doors effective September 30, 2018. During the coming months, many resources on CSHCN.org will become available on SeattleChildrens.org.

 

Caring for the Eyes of Children with Developmental and Intellectual Disabilities. 

You can read the full version here:  https://www.zocdoc.com/blog/caring-for-the-eyes-of-children-with-special-needs/ 

Key points parents and carers of children with IDDs need to know about eye care, including:

  • Conditions that put children at a higher risk of vision impairment
  • Challenges associated with vision impairments (e.g. visual attention)
  • The importance of professional eye care from an ophthalmologist
  • Options for financial assistance and other services for parents

Additionally, we have included insights on how to make children comfortable during an eye examination, such as explaining the procedures to them in advance.

CdLS Society

Cornelia de Lange Syndrome Foundation

Center for Change in Transition Services

CCTS is a state- and contract-funded project housed in the College of Education at Seattle University.

Center for Children with Special Needs (CSHCN)—now Seattle Childrens

After 20 years serving families of children with special needs, due to a loss of state funding, the Center for Children with Special Needs has closed its doors effective September 30, 2018. During the coming months, many resources on CSHCN.org  will become available on SeattleChildrens.org. It has been a pleasure serving you, getting to meet you, and helping you find resources for your child. Thank you.

Center for Parent Information and Resources (NICHCY)

Much of the rich library of materials and publications that NICHCY produced over the years has a new home here, on this website of the Center for Parent Information and Resources (CPIR).

 

Cerebral Palsy – Cerebral Palsy Guidance

Our Mission: Cerebral Palsy Guidance was created to provide answers and assistance to parents of children with cerebral palsy. Our goal is to reach as many members of the cerebral palsy community as possible, building up a network of support, as well as providing necessary assistance.

CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD) creating and implementing programs and services in response to the needs of adults and families affected by ADHD through collaborative partnerships and advocacy, including training for parents and K-12 teachers, hosting educational webinars and workshops, being an informative clearinghouse for the latest evidence-based ADHD information, and providing information specialists to support the ADHD community.

CHADD – Spanish

Children and Adults with Attention-Deficit/Hyperactivity Disorder

Charting the Life Course: Tool for Developing a Vision – Family

(Missouri Family to Family February 2014) & WA DSHS What to do and when to do it – for students with a developmental disability.

Child Health Information and Resources

A Division of Healthy Childcare Consultants, Inc.

Members of the Early Learning Advisory Council (ELAC) gathered for their final meeting under the Department of Early Learning (DEL) earlier this month. The council discussed topics ranging from the new early learning facilities grant program to the July 1, 2018 transition to the Department of Children, Youth, and Families (DCYF).

DEL Facebook Page

Washington Department of Children, Youth and Families

DEL Kindergarten Readiness Goals

Washington Kindergarten Inventory of Developing Skills (WaKIDS) Alert: Beginning July 1, 2018, the Department of Early Learning will become the Department of Children, Youth, and Families (DCYF). After June 30, 2018, this website will no longer be updated. For the latest information on early learning, visit the DCYF website at www.dcyf.wa.gov.

Disability Resource Community

The Disability Resource Community is a platform designed for people with disabilities, their family members and caregivers to ask questions, share resources and build community around the things that matter most.

Disability.gov

No longer a site but Connecting the Disability Community to Information and Opportunities use ODEP Office of Disability Employment Policy site.

Discussing Down Syndrome: A Physician’s Guide

From the National Down Syndrome Congress.

DSHS DDA Publications

Order Printed Books, DVDs and Videos Go to the Department of Printing’s Myfulfillment.wa.gov They are always prepackaged in set quantities of books or DVDs for student teaching.

Fathers Network

A Powerful Voice for Fathers and Families of Children with Special Health Care Needs. We do our work 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.

Health Manager

Look up Diseases & Conditions (Mayo Clinic)

Healthcare Services and Supports WA

Washington State Health Care Authority

Individuals with Disabilities Education Act (IDEA)

Welcome to the U.S. Department of Education’s Individuals with Disabilities Education Act (IDEA) website, which brings together IDEA information and resources from the Department and our grantees.

Infant and Early Childhood

The former Children’s Administration is now part of the Department of Children, Youth, and Families. The former Division of Behavioral Health and Recovery is now part of the Health Care Authority.

Infant Toddler Early Intervention Program (ITEIP) System Improvement Project

The former Children’s Administration is now part of the Department of Children, Youth, and Families and the former Division of Behavioral Health and Recovery is now part of the Health Care Authority. Content that previously was bookmarked through the Department of Social and Health Services website no longer is available. July 1, 2018, the Department of Early Learning became the Department of Children, Youth, and Families (DCYF).

Information for New and Expectant Parents

From the National Down Syndrome Congress

Information on How Washington State Provides DD Services

Developmental Disabilities Administration Services & Programs

Informing Families, Building Trust

A partnership for communication on developmental disabilities issues in Washington State

NIH Website on Children and Medical Research

The safety of children remains the utmost priority for all NIH research studies.

NOFAS Washington State

A 501(c)(3) non profit that exists to support individuals with FASD and their families both with direct support and by connecting them with resources in their communities.  We are the Washington State Affiliate to the National Organization on Fetal Alcohol Syndrome.  We offer support groups (both virtual and in person when covid allows) for parents and caretakers, training and advocacy.  There is no fee for our services.

Northwest’s Child

Northwest’s Child is a non-profit , care program for school age children and youth with moderate to severe developmental, physical and multiple disabilities.  Our students range in age from 5 to 21 years.  Aaron’s place is our adult day program that serves students from age 21 years old and up with moderate to severe developmental, physical and multiple disabilities.
For more information Call # 206.526.2493 or Email inquiries@northwestschild.org
Facebook and Website: https://www.facebook.com/northwestchild at http://www.Northwestchild.org

Nutrition Training Grant CHDD

Office of the Education Ombudsman

In 2006, the Washington State Legislature passed House Bill 3127 to establish the Office of the Education Ombuds (OEO) to reduce the opportunity gap by supporting families, students, educators, and communities in understanding the public K-12 education system and resolving concerns collaboratively. The legislature placed us within the Governor’s Office to ensure our independence from the public education system.

The Special Education Resource Library is intended to provide guidance and professional development resources on behalf of students with disabilities.

Outdoors For All

Our vision that people of all abilities recreate wherever and whenever they choose.

Kinship Care – Are you a grandparent or other family member raising a relative’s child? You are not alone. More than 47,000 individuals in Washington State are caring for one or more relative children (out of a total of 51,000). The financial, legal, and emotional issues of raising a relative’s child can be challenging. Services and support when raising a relative’s child can be a lifesaver.

Resources in Washington State

English, Spanish and Vietnamese (from Informing Families) Strategies to Support Real Lives: Connecting to Resources in WA State

Seattle Children’s Linkages Newsletter Online

Due to loss of funding from the Washington State Department of Health as of October 1, 2018, the Linkages newsletter will no longer be published. Please contact Beth.Crispin@seattlechildrens.org if you have any questions.

Seattle Children’s Medical Staff

The active medical staff at Seattle Children’s Hospital is comprised of over 1,200 physicians and other providers. They represent all of the pediatric medical and surgical specialties – general pediatrics as well as family practice.

Seattle Children’s Quicklinks

On-line Servies for Patients and Families

Sex Education for Parents of Children on the Autism Spectrum

Manual.

Sexuality and Autism: TEACCH Report

Sex Education for Individuals with Autism – Matching Programmes to levels of functioning

Sibling Support Project

Founded in 1990, the Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.

Starting Point: Resource Booklet

July 1, 2018, the Department of Early Learning (DEL) became the Department of Children, Youth, and Families (DCYF).

The Circles Curriculum

This program helps students “see” social distance and explains levels of intimacy and how those levels can change over time.

The Puzzle of Autism

Guide designed for education personnel working with students with ASD.

Through the Looking Glass

National Resource Center for Parents with Disabilities, is a community based nonprofit organization.

Tips on Talking With Your Young Child About Sex

American Academy of Pediatrics and HealthyChildren.org

United Cerebral Palsy (UCP)

UCP affiliates provide services and support on a community-by-community basis, serving the unique needs of people with disabilities in their region.

United Healthcare Children’s Foundation

Our mission is to improve children’s lives and help families gain access to the care they need through medical grants. Helping Kids. Changing Lives

Valued Lives: Inspired Living

Valued Lives’ passion is to empower vulnerable people to have real choice, real control and a genuine voice in the design, planning and delivery of their own supports and services.

Velo-Cardio-Facial Syndrome Educational Foundation, Inc.

22q11.2 Deletion syndrome or 22q (also referred to as Velocardiofacialsyndrome (VCFS), and/or DiGeorge syndrome) is a disorder caused by a small missing piece of the 22nd chromosome. This tiny missing portion of chromosome 22 can affect every system in the human body. 22q can be the cause of nearly 200 mild to serious health and developmental issues in children.

Violet Sees Free Glasses Program

WE can help you afford glasses for your child. Check out- https://www.violetsees.org/glasses Violet Sees Free Glasses Program CAN WE HELP YOU AFFORD GLASSES FOR YOUR CHILD? Please complete our Qualification Questionnaire to help us determine if your family would be a good fit for our program! You will hear back from us shortly after completing. IF YOU HAVE ANY QUESTIONS OR RUN INTO ANY PROBLEMS, PLEASE EMAIL JEN@VIOLETSEES.ORG

WA DOH Oral Health Program

Oral Health for People with Special Needs & Educational Materials Oral Health Promotion Card and Brochure for Children with Special Needs are also available in Spanish.

Transition Checklist (Walla Walla)

(created by Walla Walla P2P)

Washington Department of Social and Health Services (DSHS)

As a Department we are tied together by a single mission: to transform lives. Each administration within DSHS has a refined focus on this mission.

Washington DOH Community Health & Division Programs List

Our programs and services help prevent illness and injury, promote healthy places to live and work, provide education to help people make good health decisions and ensure our state is prepared for emergencies.

What’s Next? – A Vision of the Future & (Spanish)

A Vision of the Future: The key is being prepared