Resources in Your State or Country

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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.

Benefits.gov

ILRU Directory of Centers for Independent Living and Statewide Independent Living Councils

Medicaid Waiver Programs

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.

UAB Pediatric Neuromotor Clinic – Birmingham, Alabama. The UAB Pediatric Neuromotor Clinic’s mission is to construct and administer feasible, effective and evidenced-based occupational therapy services (Constraint-induced Movement Therapy), both locally and globally, for children with hemiplegia/hemiparesis to increase their independence in every area of life. The current program consists of constraint induced therapy with several different protocol options for children ages 16 months to 18 years. Any child with a neuromotor disability is eligible for the program including conditions such as cerebral palsy, hemispherectomy, hydrocephaly, and traumatic brain injury (TBI). Families travel to participate in the clinic’s three to four week sessions of therapy consisting of six hours a day, five days a week, over a 4 week period in a home-like environment.

Alaska

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

Arkansas

California

California Department of Education – Special Education information

Camp Bennett – Constraint Induced Movement Therapy Camp – San Francisco

Chinese Parents Association for the Disabled

University of California San Francisco Pediatric Stroke & Cerebrovascular Center- Pediatric Stroke Research Facility

Colorado

Children’s Hospital Colorado Stroke Program

Connecticut

Washington, D.C.

Delaware

Florida

Florida Department of Education – Includes information on the McKay Scholarships for Students with Disabilities Program

Florida Mediwaiver

The Family Cafe

Georgia

Hawaii

Idaho

Illinois

Indiana

Iowa

Kansas

Kentucky

Louisiana

Maine

Maryland

Physically Challenged Sports & Recreation Program – Kennedy Krieger Institute, Baltimore, MD

Constraint Induced and Bimanual Therapy Kennedy Krieger Institute – Kennedy Krieger Institute offers a Constraint-Induced and Bimanual Therapy Program. This therapy focuses on increasing upper extremity function for children with hemiparesis, using an evidence-based understanding of the brain’s natural ability to form new connections. The program combines a period of daily constraint-induced movement therapy followed by a period of intensive bimanual therapy.

Massachusetts

Boston Children’s Hospital Cerebrovascular Disorders and Stroke Program

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

Mississippi

Missouri

Montana

Nebraska

Nevada

New Hampshire

New Jersey

Children’s Lightening Wheels – a Paralympic Sports Club sponsored by Children’s Specialized Hospital in New Jersey

New Mexico

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

North Dakota

Ohio

The Arc of Ohio

Bureau for Children with Medical Handicaps (BCMH)

Ohio Coalition for the Education of Children with Disabilities (OCECD)

Disability Rights Ohio

Nationwide Children’s Stroke Research

Nationwide Children’s Pediatric Stroke and Vascular Anomalies Clinic

Oklahoma

Oregon

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

Strokes for Strokes

Pediatric Stroke Program at The Children’s Hospital of Philadelphia – Pediatric Stroke Research Facility

Rhode Island

South Carolina

South Dakota

Tennessee

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.

Texas Parent to Parent

The Arc of 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

Camp Summit

Texas Lions Camp

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 Children’s Hospital Pediatric Stroke Clinic

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.

Utah

CHASA Utah – Meetup Group – For Families of Children with Hemiplegia or Pediatric Stroke

Vermont

Virginia

Virginia Resources for Children with Hemiplegic Cerebral Palsy or Pediatric Stroke

Washington

West Virginia

Wisconsin

Sticks n’ Stones Bully Prevention Curriculum for Wisconsin Schools

Wyoming

Canada

Canadian Pediatric Stroke Support Association

Calgary Pediatric Stroke Program

UK

HemiHelp

HemiChat is a parent led UK charity for parents of children living with hemiplegia

SCOPE Disability organization in England and Wales