CHASA Discussion Groups – CHASA has online discussion groups for families in many states and countries. Join us!
Most of these have searchable maps.
ILRU Directory of Centers for Independent Living and Statewide Independent Living Councils – Private nonprofit agency that is designed and operated within a local community by individuals with disabilities and provides an array of independent living services
Regional Parent Technical Assistance Centers – focus is on helping families to understand special and general education laws and evidence-based practices and to actively participate in planning and decision-making about supports and services for early intervention, education, and transition to adult life
State Protection and Advocacy Agencies – federally designated legal protection and advocacy agency (P&A) for people with disabilities. Click on your state on their state map.
Administration on Intellectual and Developmental Disabilities (AIDD) – Advocacy for individuals with disabilities – searchable state map
Family Voices -Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through a national network, they provide families 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.
Alabama Special Education Services – provides technical assistance to all education agencies serving Alabama’s children with disabilities as well as gifted children. SES is also responsible for ensuring that education agencies providing services are in compliance with all federal and state laws and regulations and for processing all complaints and requests for due process hearings and mediation regarding special education issues.
Family Voices of Alabama – aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
Office for Children with Special Health Care Needs – Arizona Department of Health Services. Works to improve systems of care, provide information and referral to families, who would like assistance in finding the services available to their child; provide training to families and professionals on best practices related to medical home, cultural competence, transition to adulthood and family and youth involvement; and support telemedicine to provide services in remote areas of the state.
California Department of Education – Special Education information
Medicaid Waiver Programs – California – Some medicaid waiver programs are based on the child’s income/assets and not parent income/assets
Florida Department of Education – Includes information on the McKay Scholarships for Students with Disabilities Program
Physically Challenged Sports & Recreation Program – Kennedy Krieger Institute, Baltimore, MD
Michigan Alliance for Families – connects families of children with disabilities to resources to help improve their children’s education
Michigan Victory Games – A competitive sporting competition for athletes with various abilities
Gillick Pediatric Neuromodulation Research Lab- research in pediatric neuroplasticity and neurorehabilitation interventions
Children’s Lightening Wheels – a Paralympic Sports Club sponsored by Children’s Specialized Hospital in New Jersey
Transitions: Legal Issues for Parents and Caregivers of Special Needs Children Transitioning to Adulthood – The South Carolina Bar is pleased to announce that it has developed a handbook for parents of special needs children which addresses guardianship and conservatorship issues that arise as these children turn 18 and become legal adults
CHOP Support Group for Brain Injuries – These may be limited to CHOP patients and their families.
Camp Cranium – summer camp for children who have had brain trauma, stroke, brain tumors, or other brain-related conditions
Texas Home and Community-Based Services (HCS) – Medicaid Waiver Program. Ask to be placed on waiting list; not based on parent income. This program can begin in childhood and continue into adult years. Contact your county MHMR. Website also has search engine where you can put your zip code and find number to call to apply.
CLASS Program in Texas – Medicaid Waiver Program. Ask to be placed on waiting list; not based on parent income. This program can begin in childhood and continue into adult years. 817-438-5658 for interest list.
Texas Medically Dependent Children Program (MDCP) – Medicaid Waiver Program. Ask to be placed on waiting list; not based on parent income. Must be 21 or younger. 817-438-5658 for interest list.
HIPP - Texas Health Insurance Premium Payment (HIPP) program. HIPP helps families pay for private health insurance. It is a program for families with at least one person who gets Medicaid.
Texas Department of Aging and Disability Services – Contact Information
Texas Council for Developmental Disabilities – helps people with developmental disabilities achieve their potential for independence, productivity and integration into their communities by working to develop a comprehensive system of service and supports in Texas.
Disability Rights Texas – federally designated legal protection and advocacy agency (P&A) for people with disabilities. Their mission is to help people with disabilities understand and exercise their rights under the law, ensuring their full and equal participation in society.
Resource Guide for Students with Disabilities – Texas Council for Developmental Disabilities
From Disability Rights Texas – Data from the Texas Education Agency for the 2010 – 2011 school year regarding use of Out of School Suspension by all Texas school districts indicates that special education students are subjected to out of school suspension statewide at almost double the rate of all students.
Texas Adventure Scouts – Do you have a child who would enjoy scouting, but would struggle in a typical scouting group? Consider joining Texas Adventure Scouts, a group of families with children with special needs getting together for adventurous activities such as: rocket launch, trash bash, ride DART trains, bike rally, nature museum and hike, attend a live performance, bowling, archery, farm visit and more.
Texas Transition Conference – This event is focused on providing evidence-based practices that result in a smooth transition from school to adult life for youth with disabilities.
Kindergarten and Elementary Transitions – Virginia
Middle and High School Transitions – Virginia
HemiChat is a parent led UK charity for parents of children living with hemiplegia
SCOPE Disability organization in England and Wales