Resources and Publications
This section of our website will provide practical and helpful tools for families and professionals to assist them in better navigating healthcare systems.
This section of our website will provide practical and helpful tools for families and professionals to assist them in better navigating healthcare systems.
State Links
Washington State Hands & Voices
http://www.wahandsandvoices.org/ Washington State Hands & Voices is dedicated to supporting families with children who are deaf, deaf-blind or hard of hearing, without a bias towards communication modes. Seattle Children's - Emily’s Entourage http://seattlemamadoc.seattlechildrens.org/emilys-entourage/ This is a guest blog from Emily Kramer-Golinkoff. Her story, insight, and strength are worth your time. Info LinksBaby and Toddler Milestones, Dr. Lisa Shulman http://www.youtube.com/watch?v=pZSjm0drIGM&feature=youtu.be In this public service video for parents, Lisa Shulman, M.D., uses video of babies and toddlers to show the communication milestones expected in typically developing children. She also discusses what parents should do if they suspect their child is developmentally delayed. Topical News: Understanding the Rise in Autism http://www.youtube.com/watch?v=0MHtxM25gUw&feature=relmfu March 30, 2012 - A new report by the CDC estimates 1 in 88 children in the U.S. have some form of autism. That's a 23 percent increase since 2006 and a 78% increase since 2002. American Medical ID www.americanmedical-id.com If you have ongoing medical conditions, drug or food allergies, or are taking multiple medicines, you should wear a medical ID alert - we offer medical bracelets for women and medical bracelets for men alike. MedicAlert Foundation www.medicalert.org Our services ensure emergency responders and hospital staff get your up-to-date medical information, the moment they need it, to make informed decisions about your treatment and care. With MedicAlert Foundation, you can be confident knowing that your medical ID connects you to the most dependable emergency support network -- because every moment matters. MOST (Mothers of Supertwins) www.MOSTonline.org MOST (Mothers of Supertwins), a community of families, volunteers and professionals founded in 1987, is the leading national nonprofit provider of support, education and research on higher-order multiple births. Children's Hospice and Palliative Care Coalition http://www.chpcc.org/ CHPCC leads the way in offering solutions that make a difference for ill and dying children. Our most current success: the Medi-Cal Pediatric Palliative Care Benefit pilot program, being piloted in counties throughout California, enables children to receive palliative (comfort) care in their home in addition to the treatment they receive at the hospital. Cystic Fibrosis Foundation http://www.cff.org/ Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters — patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference. Epilepsy Foundation http://www.epilepsyfoundation.org/ The mission of the Epilepsy Foundation is to stop seizures and SUDEP, find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies. National Links
PAVE
http://www.wapave.org/ PAVE is a parent directed organization that works with families, individuals with disabilities, professionals and community members in all walks of life and with all types of disabilities. Since 1979, PAVE has provided information, training and support for over 1,000,000 individuals with disabilities, parents and professionals. Bright Futures for Families www.brightfuturesforfamilies.org Bright Futures for Families is a national initiative for families and communities to promote and improve the health and well-being of children of all ages. American Academy of Pediatrics www.aap.org The mission of the American Academy of Pediatrics is to attain optimal physical, mental, and social health and well-being for all infants, children, adolescents and young adults. PTA www.pta.org National PTA® comprises millions of families, students, teachers, administrators, and business and community leaders devoted to the educational success of children and the promotion of parent involvement in schools. HealthyChildren.org www.healthychildren.org Whether you're looking for general information related to child health or for more specific guidance on parenting issues, you've come to the right place. Here, you'll find information regarding the American Academy of Pediatrics many programs and activities, our policies and guidelines, our publications and other child health resources, as well as much, much more. Community Café www.thecommunitycafe.com This web site is intended to be a venue to help those who visit to dream, discover, design and deliver meaningful conversations that can be used to reweave a stronger social fabric for children. La Leche League International www.llli.org Our Mission is to 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. National Foster Parent Association www.NFPAonline.org The National Foster Parent Association is a champion for the thousands of families that open their heart and their home to the over 400,000 children in out-of-home placement in the US. National Healthy Start Association www.nhsa.org The National Head Start Association is a non-partisan, not-for-profit organization committed to the belief that every child, regardless of circumstances at birth, has the ability to succeed in life. The opportunities offered by Head Start lead to healthier, empowered children and families, and stronger, more vibrant communities. National Military Family Association www.nmfa.org Founded in 1969, the National Military Family Association is the leading non-profit organization focusing on issues important to military families. We believe that all military families deserve comprehensive child care, accessible health care, spouse employment options, great schools, caring communities, a secure retirement, and support for widows and widowers. American Cancer Society http://www.cancer.org/index More than one million people in the United States get cancer each year. Whether you have cancer or are close to someone who does, understanding what to expect can help you cope. In this section you can find basic information about cancer and what causes it, as well as in-depth information about specific types of cancer, their risk factors, early detection, diagnosis, and treatment options. Social Skills-Building
ASA’s Sensory Friendly Films Local theater is AMC Kent Station 14 (888-262-4386). Also: https://www.amctheatres.com/programs/sensory-friendly-films Social Skills for Children with Autism: Books and Resources (UW) http://www.bing.com/search?q=Social+Skills+for+Children+with+Autism%3A+Books+and+Resources+(UW)&src=IE-TopResult&FORM=IETR02&conversationid= Autism Aspergers Social Skills Curriculum and Activities – National Autism Resources http://www.nationalautismresources.com/autism-social-skills.html The UW Autism Center offers fun, instructional group activities that include developmentally appropriate goals to encourage social initiation, peer relationships, and other social skills in a naturalistic context. Social Thinking http://www.socialthinking.com/ “Social thinking is required before the development of social skills. Successful social thinkers consider the points of view, emotions, thoughts, beliefs, prior knowledge and intentions of others (this is often called perspective-taking - considering the perspectives of others)”. Books, workshops and more. Autism Link: “Linking Parents Together for Over a Decade” http://autismlink.com/ OASIS @ MAAP... “Your Autism Spectrum Oasis!” – “Provides information, advice, and networking to families of more advanced individuals affected by the autism spectrum, including autism, Asperger syndrome, and pervasive developmental disorder. Publishes a quarterly newsletter (NINDS).” http://www.aspergersyndrome.org/ Asperger's Occupational / Social Skill Training for Adult and older adolescent with Asperger’s Disorder - James Faust, MA, LMHC, NCC 677 Woodland Square Loop SE, Suite B1, Lacey WA 98503, (Thurston County), (360)754-4712, http://www.jamesfaust.com/aspergers.htm Working with Asperger's: Strategies for Job Success “is an Aspie-sensitive structured 24-unit course for teaching and learning pre-job search, job search, job-retention, and job-related social skills. The workshop covers course need and benefits, philosophy, accommocations, typical participant responses, teaching methods for the specific units, and transferability of job-related skills to personal situations; family dynamics for supporting the job seeker and employee with Asperger's is also discussed. The trainer, Aura Rossi, MA, models several units. Participants have the opportunity to experience the curriculum and practice using it. The training is required prior to use of the curriculum.” 8046 S Park Avenue, Tacoma WA 98408, (Pierce County), (253) 582-9592 (Main Phone), Aura Rossi. Helpful Links and Publications
Adolescent Health Transition Notebook http://depts.washington.edu/healthtr/ Read about the Health Transition process and what you can do to make it work for you. Find transition resources such as websites, checklists and tools specific to your needs. Not all the information fits every person’s needs or situation. Look through the pages and find ideas and information that is helpful for you! PremeeCare www.preemiecare.org PreemieCare is a non-profit organization dedicated to supporting families of infants born preterm through education, support, and resources. National Gateway to Self-Determination http://www.ngsd.org/ Welcome to the National Gateway to Self-Determination Web Portal, a clearinghouse for resources, training, and information on promoting self-determination. This site provides a single access for self-advocates, professionals, policy-makers, families, and the general public on the current best practices and evidence-based activities in enhancing self-determination in the lives of people with intellectual and developmental disabilities. Statewide Parent Advocacy Network - Youth Resources http://www.spanadvocacy.org/content/youth-resources-empowerment This page has many links to resources and guides to begin conversations with parents and health care providers regarding medical decisions; healthcare; career opportunities; education; college; transportation; housing; and MUCH MORE! Statewide Parent Advocacy Network - Transition from School to Adult Life http://www.spanadvocacy.org/content/transition-school-adult-life SPAN’s Transition from School to Adult Life project will provide information, training and technical assistance for youth, their families and professionals in order to support informed and effective transition from school to adult life for youth with disabilities. Inclusive Post Secondary Education -- GAELS RICE at Iona College http://www.youtube.com/watch?v=43mk9Fy8lbU&feature=youtu.be Gaels Rice Program. Got Transition? National Health Care Transition Center - Guardianship and Alternatives for Decision-Making Support For a youth or young adult who has intellectual disabilities, his or her health care transition often raises questions for health care providers and families about guardianship. This brief provides a high level look at guardianship and other decision-making supports as well as resources that will provide more in-depth information. Facebook link: https://www.facebook.com/HealthCareTransition Twitter link: https://twitter.com/GotTransition Today’s Child Communications www.TodaysChild.com *Currently under construction* ChiPPS Pediatric Palliative Care Newsletter Issue #27; May, 2012 http://www.nhpco.org/sites/default/files/public/ChiPPS/ChiPPS_May-2012_Issue27.pdf Welcome to the twenty-seventh issue of the ChiPPS electronic newsletter. This issue of our e-newsletter offers a PDF collection of articles that explore some issues involving our schools and the role of pediatric palliative and hospice care in creating systems to support children, families, and the community. National Center for Farmworker Health http://www.ncfh.org/ The National Center for Farmworker Health (NCFH), established in 1975, is dedicated to improving the health status of farmworker families by providing information services and products to a network of more than 500 migrant health center service sites in the United States as well as organizations, universities, researchers, and individuals involved in farmworker health. Easter Seals http://www.easterseals.com/ Easter Seals has been helping individuals with disabilities and special needs, and their families, live better lives for nearly 100 years. From child development centers to physical rehabilitation and job training for people with disabilities, Easter Seals offers a variety of services to help people with disabilities address life's challenges and achieve personal goals. |
Grants available for families:
The UnitedHealthcare Children’s Foundation is seeking grant applications from families in need of financial assistance to help pay for their child’s health care treatments, services or equipment not covered, or not fully covered, by their commercial health insurance plan. Qualifying families can receive up to $5,000 to help pay for medical services and equipment such as physical, occupational and speech therapy, counseling services, surgeries, prescriptions, wheelchairs, orthotics, eyeglasses and hearing aids. To be eligible for a grant, children must be 16 years of age or younger. Families must meet economic guidelines, reside in the United States and have a commercial health insurance plan. Grants are available for medical expenses families have incurred 60 days prior to the date of application as well as for ongoing and future medical needs. Parents or legal guardians may apply for grants at http://www.uhccf.org, and there is no application deadline. Organizations or private donors can also make tax-deductible donations to the foundation at this website. “The UnitedHealthcare Children’s Foundation is dedicated to improving a child’s health and quality of life by making it easier to access needed medical-related services. The grants enable families to focus on their children’s care instead of worrying about how they’ll pay their medical bills,” said Matt Peterson, president, UnitedHealthcare Children’s Foundation. “Eligible families in need are encouraged to apply online for a medical grant today and take advantage of this valuable resource.” In 2011, UHCCF awarded more than 1,200 grants to families across the United States for treatments associated with medical conditions such as cancer, spina bifida, muscular dystrophy, diabetes, hearing loss, autism, cystic fibrosis, Down syndrome, ADHD and cerebral palsy. As successful fund-raising efforts continue to grow, UHCCF is hoping to help more children and families in 2012. |