CHASA Discussion Groups – CHASA has online discussion groups for families in many states and countries. Join us!
National Listings
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
National Association of Councils on Developmental Disabilities
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.
State Assistive Technology Programs
State Disability Department Websites
Administration on Intellectual and Developmental Disabilities (AIDD) – Advocacy for individuals with disabilities – searchable state map
National Institute on Disability and Rehabilitation Research
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
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.
Arizona
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.
Arizona Department of Education Special Education Website
California
California Department of Education – Special Education information
Chinese Parents Association for the Disabled
Medicaid Waiver Programs – California – Some medicaid waiver programs are based on the child’s income/assets and not parent income/assets
San Francisco United School District Community Advisory Committee for Special Education
Support for Families of Children with Disabilities
Florida
Florida Department of Education – Includes information on the McKay Scholarships for Students with Disabilities Program
Maryland
Physically Challenged Sports & Recreation Program – Kennedy Krieger Institute, Baltimore, MD
Michigan
Power Her Pride – Michigan Girls with Disabilities Event
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
Epilepsy Foundation of Michigan
Minnesota
Gillick Pediatric Neuromodulation Research Lab– research in pediatric neuroplasticity and neurorehabilitation interventions
Missouri
GENERAL SERVICES IN MISSOURI:
Brain Injury Association of Missouri
Advocacy and legal services
Behavior Intervention Services
Judevine Center for Autism
314-649-5598
Missouri First Steps
Early Intervention Program
ST. LOUIS COUNTY/CITY, MISSOURI:
Missouri Commision on Human Rights
Paraquad
Private 501(c)(3) non-profit
5240 Oakland Ave.
St. Louis, MO 63110
314-289-4200
St. Louis Office for Developmental Disability Resources
2334 Olive Street
St. Louis, MO 63103
Missouri Department of Vocational Rehabilitation
Missouri Protection and Advocacy Services
Free legal and advocacy services
Disability Resources Association
JEFFERSON COUNTY, MISSOURI:
Division of Developmental Disabilities
Jefferson County Developmental Disabilites Resources Board
Jefferson County Service Coordination
636-282-4444
Disability Resources Association
JC Transit
Free transportation for people with disabilities within Jefferson County, MO.
636-937-6454
Next Step for Life
636-282-4400
Pony Bird Inc.
Respite care
ADA Project
Advocacy and Legal services
MPACT
Advocacy and legal services
Nurses for Newborns
Assessments, info/referral, personal care supports, preschool supports
St. Louis Crisis Nursery
Crisis services and respite care/family supports
314-768-3201
PRIVATE THERAPY SERVICES IN ST. LOUIS, MO AREA:
Therapy Relief
636-733-3330
Sensory Solutions
2 STL area locations. Provide PT, OT, SP and Feeding therapy
Creve Coeur location – 314-567-4707
St. Peters location – 636-922-4700
Therapeutic Playtime
Provide PT, OT, SP
Arnold location – 636-464-5439
PS Kids
Provide PT, OT, Developmental Therapy, Feeding therapy, Handwriting clinics
South St. Louis County location – 314-845-7751
St. Louis Children’s Hospital Therapy Services
Cardinal Glennon Hospital Therapy Services
Mercy Autism Center
641 N. New Ballas Road
St. Louis, MO 63141
314-872-3345
New Jersey
Children’s Lightening Wheels – a Paralympic Sports Club sponsored by Children’s Specialized Hospital in New Jersey
New Jersey Planning for Adult Life
New York
New York Health and Human Services – Children With Special Needs
North Carolina
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
Ohio
Bureau for Children with Medical Handicaps (BCMH)
Ohio Coalition for the Education of Children with Disabilities (OCECD)
Pennsylvania
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
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
CLASS Approval of Vehicle Modifications as Adaptive Aids
All Texas Department of Aging and Disability Services
Department of Assistive and Rehabilitative Services – Early Childhood Intervention Services – 1-800-628-5115
Department of Assistive and Rehabilitative Services (DARS)
Texas Assistive Technology Network
Family Support Council of Tarrant County
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.
The Arc of northeast Tarrant County
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.
State of Texas Calendar of Events pertaining to disability issues
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.
Virginia
Virginia Resources for Children with Hemiplegic Cerebral Palsy or Pediatric Stroke
Parent Educational Advocacy Training Center – Transition
Kindergarten and Elementary Transitions – Virginia
Middle and High School Transitions – Virginia
Virginia Transition Services for Students with Disabilities
Wisconsin
Sticks n’ Stones Bully Prevention Curriculum for Wisconsin Schools
Canada
Canadian Pediatric Stroke Support Association
Calgary Pediatric Stroke Program
UK
HemiChat is a parent led UK charity for parents of children living with hemiplegia
SCOPE Disability organization in England and Wales
