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- Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)'s mission is to provide a support network for parents and caregivers; to provide a forum for continuing education; to be a community resource and disseminate accurate, evidence-based information about AD/HD to parents, educators, adults, professionals, and the media; to promote ongoing research; and to be an advocate on behalf of the AD/HD community.
- Speak Now For Kids is a national online campaign designed to compel individuals, family members and providers across the country to tell Congress what children need in health care reform.
- Wrights Law is a web page that parents, educators, advocates, and attorneys come to for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.
Assistive Technology (AT)
- New Hampshire AT Resource List provides information and resources on Assistive Technology in NH
- Able Data is an AT information and resources website that contains information on: conferences, equipment and products. It also has fact sheets and other publications. National and state specific information is included.
- New Hampshire Assistive Technology an Alliance for Assistive Technology, Education and Community Health. ATECH Services is the largest provider of comprehensive assistive technology services in New Hampshire.
- The Asperger’s Association of New England (AANE)'s mission is to foster awareness, respect, acceptance, and support for individuals with AS and related conditions and their families.
- The Autism Society of America (ASA) is increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy.
- Learn the Signs. Act Early is a public awareness campaign that aims to educate parents about childhood development, including early warning signs of autism and other developmental disorders, and encourages developmental screening and intervention.
- Maternal and Child Health Library – Autism Spectrum Disorders Knowledge Path provides national and local resources for families and professionals.
- The Autism Society of New Hampshire is a non-profit organization consisting of individuals with ASD, families, professionals, friends, and community members.
- The Schafer Autism Report is the most comprehensive and most read autism publication where you will find the latest on anything related to Autism.
- Schwab Foundation for Learning has information on Learning Difficulties and Disabilities. The GreatSchools web site empowers and inspires parents to get involved in their children's development and educational success. We offer preschool, elementary, middle and high school information for public, private and charter schools nationwide.
- American Foundation for the Blind - FamilyConnect is an online, multimedia community created by the American Foundation for the Blind (AFB) and the National Association for Parents of Children with Visual Impairments (NAPVI). This site gives parents of visually impaired children a place to support each other, share stories and concerns, and link to local resources.
- Family Caregiving 101 is a website that has links, tips, resources, etc. The National Family Caregivers Association (NFCA) and the National Alliance for Caregiving (NAC) have joined together to recognize, support and advise this vital group of Americans. Family caregivers have been part of America’s health care picture for a very long time. Yet, their roles and special needs are just being acknowledged.
- Childhood Cancer Lifeline of NH provides support for NH children with cancer and their families
- The Jimmy Fund supports cancer research and care at Dana-Farber Cancer Institute
- Angels of Hope provides cancer patients and their caregivers easy to understand and comprehensive information to make informed decisions and practical services and assistance to aid them in obtaining treatment.
- Cystic Fibrosis Foundation’s 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.
Deaf and Blind
Deaf and Hard of Hearing
- Opening Doors is a tip sheet on technology and communication options for children with hearing loss
- Consumer and Family Toolbox is geared for people with developmental disabilities and families when working with family care attendants.
- Council for Exceptional Children is dedicated to improving the educational success of individuals with disabilities and/or gifts and talents.
- Community Bridges provides services and support to people with a disability due to aging, chronic health conditions, developmental delays, or traumatic brain injury. This agency offers help to: people with disabilities, families, providers, schools, etc.
- Stigma Resources - Articles and suggestions on the effects of stigma and ways to deal with stigma.
- American Diabetes Association - Resources for parents of children with Diabetes
- JDRF Bag of Hope - Juvenile Diabetes Research Foundation International (JDRF)- The Bag of Hope program, graciously underwritten by Roche Diagnostics Corporation, is a free Outreach program designed to provide information and support to families with children who have been newly diagnosed with diabetes.
- A Bag of Hope is a kit filled with relevant diabetes education materials, some intended to communicate directly with the child and some geared toward the adult caregiver(s), including (but not limited to): Rufus, the Bear with Diabetes, Rufus Comes Home book, A First Book for Understanding Diabetes, other reference books, "There's Nothing You Can't Do" DVD, and an Accu-Chek® Aviva Compact Blood Meter. A dedicated volunteer delivers the Bag of Hope to newly diagnosed children and their families.
Down Syndrome (DS)
- National Down Syndrome Society's mission is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.
A new parent package can be found here and printed and given to parents.
- National Down Syndrome Congress'mission is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome.
- This website also has an excellent physicians guide to giving a diagnosis etc, so if there is a suspected diagnosis a physician can view this before giving the diagnosis (if possible)
- Massachusetts Down Syndrome Congress is a local resource that ensures individuals with Down syndrome are valued, included, and given the opportunities to pursue fulfilling lives by providing information, networking opportunities, and advocacy for people with Down syndrome and their families, educators, health care professionals, and the community-at-large.
- National Eating Disorders Association is dedicated to providing education, resources and support to those affected by eating disorders. Whether you are an individual living with an eating disorder, a family member or friend looking to offer support to a loved one, or a treatment professional looking to help others — we have structured our site to address your needs
- NH Department of Education offers a wide variety of programs and services in support of New Hampshire's students, teachers, educators, administrators, families, and community members.
- Epilepsy and My Child If you have a child with epilepsy, this website is for you. Whether your child was just diagnosed, or you have specific concerns about medications, getting support at school, or another issue, our goal is to provide the information you need.
- Parent’s Guide: When The Seizures Don’t Stop…Why—and What to do Next. This booklet has great information for Parents when they want more extensive information about epilepsy and seizures.
- Epilepsy and Seizure Disorders: A Resource Guide for Parents Developed by parents and professionals to help parents of children with epilepsy and/or a seizure disorder to better understand their child’s condition. This 48-page guide is divided into four sections: (1) Understanding Epilepsy and/or Seizure Disorders, (2) Health Care for my Child: Access to Care/Access to Services, (3) Advocacy and Support, and (4) Forms and Tools.
- Epilepsy Foundation of America® works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure. In addition to programs conducted at the national level, epilepsy clients throughout the United States are served by more than 50 Epilepsy Foundation affiliates around the country
- Epilepsy.com is your online source for information, community and resources aimed at your experience with epilepsy. Our site features information about epilepsy and furthers the vision of the Epilepsy Therapy Project to create a powerful resource for everyone involved in caring for, or treating, those with epilepsy.
Fetal Alcohol Spectrum Disorders
Grief, Loss, & Decision Making
- Book- Empty Cradle, Broken Heart: Surviving the Death of your Baby, by Deborah Davis. The heartache of miscarriage, stillbirth, or infant death affects thousands of U.S. families every year. Empty Cradle, Broken Heart offers reassurance to parents who struggle with anger, guilt, and despair after such tragedy.
- Book- Loving and Letting go: For Bereaved Parents who turned Away from Aggressive Medical Intervention for their Critically Ill Newborn, by Deborah Davis There are so many questions to ask: Questions about diagnoses, treatment, logistics, outcomes and prognoses. This book confirms the love, wisdom, courage and faith that lie in the heart of letting go, and offers support for finding peace.
- Now I Lay Me Down to Sleep Foundation is a website that has pictures from professional photographers that donate their time to give families a lasting memory of their baby or child, sometimes before they pass, other times after....a lot of families don't realize there is this wonderful service out there, and it is often not something that they think about.
- The Compassionate Friends is a website to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive.
Health and Wellness
- Easter Seals of NH Disability Services, 12 Kingsbury Street, Keene, NH 03431. Phone: 352-0165
- Provides Early intervention, home-based services for children birth to three years and their families.
- Monadnock Developmental Services, 121 Railroad Street, Keene, NH 03431. Phone: 352-1304 or 1-800-469-6082;extension 293
- Provides advocacy and case management services, family support, and respite along with residential, vocational, recreational and therapeutic services for persons with developmental disorders.
- Partners in Health for the Monadnock Region - is a community-based family support program designed to address the needs of families who have children with chronic health conditions.
- Rise...For Baby and Family, 147 Washington Street, PO Box 824, Keene, NH 03431. Phone: 357-1395
- Supports and services for infants and toddlers with special needs and their families. Rise also provides an on-site childcare program, which integrates children of different abilities.
- At this time Rise does not have a website.
- UNH Cooperative Extension, 800 Park Avenue, Keene, NH 03431. Phone: 352-4550
- Provides research-based education and information to strengthen youth, families and communities including: nutrition education on an individual or group basis to families who are income eligible, workshops around family resource management, a newsletter about growth and development of children up to age two.
- PDRhealth is the consumer Web portal of the Physicians’ Desk Reference (PDR®), provides a resource on drugs and supplements. It is important to know the size, shape, color and strength of any pills you take routinely. If you are starting a new medication, you can see a picture of it here on this website.
- The Substance Abuse and Mental Health Services Administration's (SAMHSA) National Mental Health Information Center provides information on mental health for individuals, families, policymakers, providers, and the general public. Types of information offered include: where to find services, fact sheet on mental health conditions, mental health organizations, conferences, events, and grants. The website offers free publications on topics like: managing anxiety, depression, suicide, reducing stigma, ADHD, recovery, stress, trauma, violence prevention, etc.
- The National Alliance on Mental Illness New Hampshire (NAMI NH) is dedicated to improving the quality of life of persons of all ages with mental illness/SED (Serious Emotional Disorders) and their families so they may have the opportunity to recover from mental illness, achieve their aspirations and live, work and play in the community of their choice. NAMI NH provides support to families and the public at large through its family support groups and educational programs, information and referral services and public presentations.
- United Mitochondrial Disease Foundation (UMDF) offers support to all sufferers of mitochondrial disorders regardless of diagnosis, suspected or confirmed. Their mission is to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families.
- Marcel’s Way provides those whose lives are touched by Mitochondrial Disorders with information, education, and support.
- Lab Tests Online is a public resource on clinical lab testing from the laboratory professionals who do the testing. A site to look up lab tests and what the tests are looking for.
- The Olie Foundation provides tools for living better on home IV and tube feedings.
- Muscular Distrophy Association MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education.
Multiple Sclerosis (MS)
- Parents of Premature Babies Inc. (Preemie-L) provides support to families and caregivers of premature babies. Support is offered primarily through the Preemie-L Discussion Forum and the Preemie-L List, where new parents and those with older children can share their stories and concerns. Neonatologists, nurses, authors, and pediatric specialists also contribute to the discussions.
- March of Dimes’ mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality.
- Prematurity is a volunteer preemie website from their family to your preemie. Their goal is to support preemie parents by providing information on prematurity and preemie care. They offer Preemie Parent Support for Preemie Special Needs.
- Philips Children’s Medical Ventures is a leading provider of education services and developmentally supportive products for premature babies, healthy newborns and hospitalized infants.
- Meriter Preemie Health offers articles for parents of preemies on health and emotional issues, occurrence and survival statistics, and commonly used medicines.
- Dr. Michael Hynan, an excellent speaker, stresses reactions (such as posttraumatic stress disorder) in parents that have had their premature or full-term high-risk infant hospitalized in a neonatal intensive care unit. Helping Parents Cope with a High-Risk Birth: Terror, Grief, Impotence, and Anger
- The Preemie Store is a website where you will find preemie clothes , from micropreemie to going home. They try to provide you with a complete selection of clothing for your smaller baby, from one pounders up to small newborn sizes.
- Preemie Proud offers a great selection of Preemie clothes and Micro Preemie clothes including NICU friendly clothing, daywear, and accessories
Recreation and Leisure
- National Parks Access Pass website has information on passes for people with disabilities. The pass covers discounts and free admission to National Parks.
Spinal Cord Injury (SCI)
- “Yes You Can” - An Online Guide for Persons with Spinal Cord Injury
State Resources - NH
- Council for Children & Adolescents with Chronic Health Conditions established to advocate and collaborate with state and local agencies to assess and improve Access to regular school and health care, Capacities of communities to effectively respond to needs of children and adolescents with chronic health conditions, and the delivery of meaningful services and support to children and adolescents with chronic health conditions and their families.
- Childrens Alliance of NH / NH Child Advocacy Network (CAN) promotes policies and practices that enable all children to lead healthy and productive lives and to reach their full potential.
- NH Bureau of Developmental Services works with NH's developmental services system to ensure public resources are used effectively to support individuals and families in their community through Leadership and vision, Allocation of resources, Communication, Technical assistance, and Monitoring of quality assurance and consumer safeguards.
- Family Centered Early Support and Services are provided in all communities throughout NH and can include any of the supports and services such as Family Support, Education and Counseling, Hearing Services, vision services, Health and Nursing Services, Medical and Diagnostic and Evaluation Services, Nutrition Counseling & Assessment, Occupational Therapy, Physical Therapy, Special Equipment, Special Instruction, Speech and Language Therapy, Transportation Services, and Service Coordination
- NH Department of Health and Human Services (DHHS) is the largest agency in New Hampshire state government, responsible for the health, safety and well being of the citizens of New Hampshire. DHHS provides services for individuals, children, families and seniors and administers such programs and services as mental health, developmental disability, substance abuse and public health. This is accomplished through partnerships with families, community groups, private providers, other state and local government entities, and many citizens throughout the State who help make New Hampshire a special place in which to live.
- Special Medical Services Title V, Children with Special Health Care Needs Program provides medical and financial services to children with special health care needs (CSHCN). Children with special health care needs are those who have, or are at increased risk for, chronic physical, developmental, behavioral, or emotional conditions, which require health and related services of a type beyond that required by children generally. Special Medical Services provides NH families with health information and support services for themselves, and helps them obtain specialty health care services for their eligible children with physical disabilities, chronic illnesses and special health care needs. SMS also provides care coordination services; support for child development and neuromotor clinics; nutritional and feeding/swallowing consultation; psychological and physical therapy services; and support for the NH Family Voices and Parent-to-Parent programs.
- NH Medicaid program is a federal and state funded program that serves needy individuals and families who meet financial and other eligibility requirements and certain other individuals who lack adequate resources to pay for medical care.
- The Disabilities Rights Center (DRC) is a statewide organization that is independent from state government or service providers and is dedicated to the full and equal enjoyment of civil and other legal rights by people with disabilities.
- LifeShare provides the highest quality of support services using innovate, person-centered approaches to guarantee individualized and holistic support, responsive to building meaningful relationships with the community and with individuals in the most compassionate and most cost effective manner.
- Early Learning NH is an organization committed to ensuring that all New Hampshire children have the opportunity to reach their full potential by expanding access to affordable quality child care and early education; supporting the child care industry; building public-private partnerships; and helping families balance work and family.
- Institute On Disabilities / UCED at the University of New Hampshire advances policies and systems changes, promising practices, education, and research that strengthen communities and ensure full access, equal opportunities, and participation for all persons.
- NH Governors Commission on Disabilities (GCD)’s goal is to remove the barriers, architectural, attitudinal or programmatic, which bar persons with disabilities from participating in the mainstream of society.
- New Hampshire Child Care Resource & Referral Network (NHCCR&R) is composed of community based Child Care Resource and Referral programs. These strategically situated programs educate and support families, providers and the community regarding child care issues.
- NH Connections - Helping families schools and communities work together to improve education outcomes for all NH Children while meeting the unique needs of children with disabilities and their families
- Cedarcrest Center for Children with Disabilities provides residential care and outpatient therapy services to children with significant disabilities.
- Crotched Mountain Rehabilitation Center provides programs and services to assist children and adults with disabilities to achieve optimal growth and independence. Crotched Mountain offers a full range of clinical and rehabilitation services for children and adults with disabilities. Each year, we serve more than 2,000 people from throughout New Hampshire, New England, and New York.
- Special Olympics New Hampshire is a non-profit organization providing sports training and athletic competition for children and adults with mental challenges. Currently 2,500 participants and thousands of volunteers, friends and family members take part in SONH activities.
- New Hampshire Yellow Pages for Kids at the Yellow Pages for Kids with Disabilities, you will find educational consultants, psychologists, diagnosticians, health care specialists, academic tutors, speech language therapists, advocates, and attorneys. You will also find government programs, grassroots organizations, special education schools, and parent support groups.
- Parent Information Center provides information, training and support to families of children with disabilities in New Hampshire.
- The New Hampshire Council on Developmental Disabilities is dedicated to: Dignity, full rights of citizenship, equal opportunities, and full participation for all New Hampshire citizens with developmental disabilities
- NH Family Voices works to achieve family-centered care for all children. Through their national network, they provide families with tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.
- NH Partners In Health Program helps families of children with a chronic health condition that significantly impacts daily life to advocate, access resources, navigate systems and build capacity to manage the chronic health condition of their child.
- Parent to Parent of NH’s mission is to provide a channel of support for parents of children who have special needs.
- People First of NH Self-Advocacy Organization believes that people with disabilities should be treated as equals. They should be given the right to make the same decisions, and to have the same choices and responsibilities as anyone else. They should be allowed to make new friends and renew old friendships and be as independent as they are able. They should be able to live where they want to live and work where they want to work. They should also be included in society and not be singled out as being different. They will work to accomplish these ends in New Hampshire.
State Resources - VT
- Miracles in Motion provides therapeutic riding for people with Special Needs in the Monadnock Region
- It’s My Life is a guidebook about transitioning to adulthood and was created by, for, and with youth. It is designed for child welfare professionals and others responsible for guiding and supporting teens as they prepare for adulthood.
- New Hampshire Young Adult Resource Guide is a transition guide from New Hampshire Division for Children, Youth and Families and Division
Trisomy 13 & 18
- Support Organization for Trisomy (SOFT) is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and related chromosomal disorders. Support is provided during prenatal diagnosis, the child's life and after the child's passing. SOFT is committed to respect a family's personal decision - in alliance with a parent / professional partnership. SOFT provides: annual family and medical conference, educational literature on their website, and helpful resources and support groups on their website.
- Living with Trisomy 13 (Patau Syndrome) is a website that is focused on prayerful support and gifts of love to those touched by a Trisomy 13 child
- Trisomy 18 Foundation, Inc.’s mission is to guide the search for a cure and treatments, to educate and support medical professionals, and to create a caring worldwide community for affected families.