Extraordinary Care for Extraordinary Kids

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In late 1999, Pope's Kids Place was awarded a grant by the U.S. Office of Rural Health Policy, Health Resources & Services Administration (HRSA) to identify special needs children in Lewis, Cowlitz, Grays Harbor, Mason, Pacific and Wahkiakum counties and help families gain access medical and dental care.

A survey was conducted to identify the most effective way to provide and distribute information about various programs to these families. At that time, 75% of the respondents indicated that they had computers with Internet access and preferred obtaining information on the Web.

The final implementation of the HRSA grant resulted in the compilation and publication of this web-based resource locator of service providers and general information for families needing assistance. The list has grown as others have submitted valuable resources for special needs children and their families.

General Disability-Related Resources

Disability Acronyms

Disability-Related Glossary of Terms From the Center for Disability Information & Referral

The Merck Manual of Medical Information--Home Edition

General :: National :: Washington State

Federal Agencies, Programs, and Services, and Nationwide Organizations

Ability Free Internet community where young people with disabilities and illnesses connect.

ADA Home Page Information and Technical Assistance on the Americans with Disabilities Act. Links to Federal web sites and other web sites with disability-related information.

Adolescent Health Transition Project Designed to help smooth the transition from pediatric to adult health care for adolescents with special health care needs. This site is a resource for information, materials, and links to other people with an interest in health transition issues.

The American Academy of Neurology Foundation The American Academy of Neurology Foundation supports education and research to improve the quality of life for one in six Americans affected by neurological disorders

American Cancer Society A nationwide, community-based voluntary health organization.

American Council of the Blind The Council strives to improve the well-being of all blind and visually impaired people by: elevating the social, economic and cultural levels; improving educational and rehabilitation facilities/opportunities; cooperating with the public and private institutions and organizations concerned with blind services; encouraging and assisting them to develop their abilities and conducting a public education program to promote greater understanding of blindness and the capabilities of blind people.

American Foundation for the Blind Dedicated to addressing the critical issues of literacy, independent living, employment, and access through technology for the ten million Americans who are blind or visually impaired.

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American Society for Deaf Children ASDC is a national organization of families and professionals committed to education, empowering, and supporting parents and families to create opportunities for their children who are deaf and hard of hearing in gaining meaningful and full communication access, particularly throught the competent use of sign language, in their homes, schools, and communities.

Benefits for People with Disabilities The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities.

Centers for Disease Control The lead federal agency for protecting the health and safety of people - at home and abroad. Serves as the national focus for developing and applying disease prevention and control, environmental health, and health promotion and education activities designed to improve the health of the people of the United States.

Center for Health and Health Care in Schools CHHCS was established to explore ways to strengthen the well being of children and youth through effective health programs and health care services in schools.

Center for Mental Health Services The Substance Abuse and Mental Health Services Administration's (SAMHSA) National Mental Health Information Center provides information about mental health. The National Mental Health Information Center was developed for users of mental health services and their families, the general public, policy makers, providers, and the media.

Child Welfare Information Gateway  Formerly the National Clearinghouse on Child Abuse and Neglect Information and the National Adoption Information Clearinghouse, Child Welfare Information Gateway provides access to information and resources to help protect children and strengthen families.

CysticFibrosis.com An Internet community for cystic fibrosis patients, families and loved ones offering everything from basic medical definitions to daily encouragement to Cystic Fibrosis Centers nationwide.

Department of Health and Human Services (HSS) The United States government's principal agency for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves.

Do-It People with disabilities successfully pursuing college and careers, including challenging fields in business, science, technology, engineering, and mathematics (STEM).

Epilepsy Foundation National organization that works for people affected by seizures through research, education, advocacy and service.

The Family Village School - Early Intervention Resources A global community of disability-related resources. This site offers links to early intervention resources.

The Fathers Network Designed to celebrate and support fathers and families raising children with special health care needs and developmental disabilities.

Family Voices National grassroots network of families and friends, advocates for health care services that are family-centered, community-based, comprehensive, coordinated, and culturally competent for all children and youth with special health care needs. Promotes the inclusion of all families as decision makers at all levels of health care, and supports essential partnerships between families and professionals.

Federal Communications Commission Disability Rights Office

KidSource In-depth & timely education & healthcare information.

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Housing & Mortgages for People with Disabilities This guide is for persons living with a disability and in need of useful information and assistance in buying a home. The guide also turns to you who have a family-member, friend or other relation with a disability and want to learn more about homeownership.

Institute for Family-Centered Care Provides leadership to advance the understanding and practice of patient- and family-centered care in hospitals and other health care settings.

Learning Disabilities Online Interactive guide to learning disabilities for parents, teachers, and other professionals.

Make-A-Wish Foundation The foundation gives hope, strength, and joy to children with life-threatening medical conditions.

National Association for the Education of Young Children (NAEYC) The nation's largest and most influential organization of early childhood educators and others dedicated to improving the quality of programs for children from birth through third grade.

National Center for Education in Maternal and Child Health Provides national leadership to the maternal and child health community in three key areas-program development, policy analysis and education, and state-of-the-art knowledge-to improve the health and well-being of the nation's children and families.

National Cystic Fibrosis Foundation Mission is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.

National Respite Locator Service Helps parents, caregivers, and professionals find respite services in their states and local areas to match their specific needs.

Massachusetts Chronic Disease Improvement Network  Assists health care professionals and institutions to improve clinical outcomes for people living with chronic illness. Currently the information available on this Website is aimed specifically toward asthma and diabetes.

Maternal and Child Health Bureau We strive for a society where children are wanted and born with optimal health, receive quality care and are nurtured lovingly and sensitively as they mature into healthy, productive adults. MCHB seeks a nation where there is equal access for all to quality health care in a supportive, culturally competent, family and community setting.

MEDLINEplus Information to help answer health questions.

The Muscular Dystrophy Association Source for news and information about neuromuscular diseases, MDA research and services for adults and children with neuromuscular diseases and their families.

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National Association for Hospitals and Related Institutions An organization of children's hospitals, large pediatric units of medical centers and related health systems, including those that specialize in rehabilitative care of children with serious chronic or congenital illnesses.

National Down Syndrome Society Through education, research and advocacy, the National Down Syndrome Society works to ensure that all people with Down syndrome have the opportunity to achieve their fullest potential.

National Information Center for Children and Youth with Disabilities (NICHCY) The national information center that provides information on disabilities and disability-related issues. Anyone can use its services: families, educators, administrators, journalists, students. Our special focus is children and youth (birth to age 22).

The National Institute of Diabetes and Digestive and Kidney Diseases Conducts and supports research on many of the most serious diseases affecting public health. The Institute supports much of the clinical research on the diseases of internal medicine and related subspecialty fields as well as many basic science disciplines.

National Institutes of Health Uncovers new knowledge that will lead to better health for everyone.

The NIH National Institute of Neurological Disorders and Stroke (NINDS) Mission is to reduce the burden of neurological disease-a burden borne by every age group, by every segment of society, by people all over the world.

National Multiple Sclerosis Society The National MS Society is committed to building a movement by and for people with MS that will move us closer to a world free of this disease.

The National Organization for Rare Disorders (NORD) A federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Several searchable databases are available on the website.

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National Organization on Fetal Alcohol Syndrome Dedicated to eliminating birth defects caused by alcohol consumption during pregnancy and improving the quality of life for those individuals and families affected. NOFAS, the only national organization focusing solely on FAS, takes a multicultural approach to prevention and healing.

National Rehabilitation Information Center For Independence Gateway to an abundance of disability- and rehabilitation-oriented information organized in a variety of formats designed to make it easy for users to find and use.

National Spinal Cord Injury Association The nation's oldest and largest civilian organization dedicated to helping the hundreds of thousands of Americans coping with the results of spinal cord injury and disease.

Office of Special Education and Rehabilitative Services (OSERS) Committed to improving results and outcomes for people with disabilities of all ages.

PACER Center The mission of PACER Center is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.

Parents Helping Parents Provides education and skills training, information, guidance, and peer support for families with the unexpected diagnosis of and ongoing impact of childhood disabilities, including but not limited to intellectual, learning or physical disabilities and special health care needs.

Pediatric Orthopaedic Surgery Dedicated to the musculoskeletal system of children. Its intent is to provide information pertaining to pediatric orthopaedics, including fractures, bone diseases, bone and soft tissue tumors, bone disorders, and syndromes.

Rural Institute on Disabilities Center for Excellence in Disability Education, Research, and Service, is part of the national network of programs funded by the Federal Administration on Developmental Disabilities (ADD) committed to increasing and supporting the independence, productivity, and inclusion of persons with disabilities into the community.

The Social Security and Disability Resource Center

Special Needs Assistance Program for Children (SNAP4Kids) A national advocacy organization that promotes the awareness and acceptance of children with special needs.

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Spina Bifida Association of America The Mission of the Spina Bifida Association of America is to promote the prevention of spina bifida and to enhance the lives of all affected.

Starlight Starbright Foundation Helps seriously ill children and their families cope with their pain, fear and isolation through entertainment, education, and family activities.

Understanding Supplemental Security Income (SSI) for Children

United Cerebral Palsy The leading source of information on cerebral palsy and a pivotal advocate for the rights of persons with any disability.

Zero to Three Supports the healthy development and well-being of infants, toddlers and their families.

General :: National :: Washington State

Washington State Regional and Local Agencies, Programs, Services, & Organizations

The Arc of Washington State Promotes the education, health, self-sufficiency, self-advocacy, inclusion, and choices of individuals with developmental disabilities and their families.

Child Care Resource and Referral Network of Washington State A network of 18 community-based, private, nonprofit child care resource and referral agencies across Washington State (USA). We offer consumer education, training and technical assistance to parents, child care providers, employers and the community.

Cowlitz County Health Department

Disability Rights Washington Pursuing justice on behalf of people with disabilities on matters related to their human, legal, and civil rights. Promoting Dignity, Equality and Self-Determination. Formerly Washington Protection & Advocacy System (until June 2007).

Division of Developmental Disabilities For the people with developmental disabilities and their families.

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Lewis County Head Start (LCHS) Head Start is a federally funded program for pre-kindergarten children age three and four years. It provides services in the areas of education, health, social services, and parent involvement for income-eligible families. Reliable Enterprises is the Grantee Agency for Lewis County Head Start. As the grantee, Reliable Enterprises has legal and fiscal responsibility for LCHS. It serves over 150 kids in Lewis County through six sites located in Centralia, Toledo, Vader, Randle, and Salkum.

Human Response Network of Lewis County A private not-for-profit 501(c)3 agency that assists the people of Lewis County.

Lewis County Health Department

Lewis County Work Opportunities
A vocational rehabilitation facility whose mission is to help / train physically, mentally and socially handicapped persons of Lewis County to rise above barriers and secure work. A Lewis County United Way agency. Toll free 1-800-748-9921.

Lewis Mason Thurston Area Agency on Aging Facilitates an array of services to support the unpaid family caregiver who cares for a loved one aged 18 or older.

Northwest Bulletin  Family and Child Health provides information on public health issues relating to children and families, and serves as a forum for public health professionals in the Northwestern United States (Region X) to share information on local and regional activities. The bulletin is published online every six month.

Paratransit Services has a contract with the Washington State Department of Social Services (DSHS) to help Medicaid clients get to their medical appointments.

The Pediatric Palliative Care Consulting Service

Pierce County Health Department

Reliable Enterprises  A non-profit organization whose purpose is to improve the quality of life for residents of the Lewis County area who are developmentally disabled, and often economically disadvantaged.

The Washington Assistive Technology Act Program WATAP serves Washington residents of all ages with disabilities of all types, their families, employers and employment service providers, educators, health care and social service providers, and others seeking information about assistive technology (AT) and accessible information technology.

Washington Parent Power A project of the Children's Alliance. We are a statewide advocacy organization working to improve the well-being of Washington's children. One way to do our job is to provide information you can use to get the help your family needs.

Washington PAVE, a parent-directed organization, exists to increase independence, empowerment, and future opportunities for consumers with special needs, their families and communities, through training, information, referral and support.

Washington State Developmental Disabilities Endowment Trust Fund Now known as The Life Opportunities Trust, it's a public-private partnership that makes it possible for families to enhance the quality of life for their loved ones with a developmental disability, and for individuals with developmental disabilities to participate in their own financial future.

Washington State Medical Home Information, tools, and resources that support a medical home for children and youth with special health care needs (CYSHCN) and their families.

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