Family Empowerment Representatives
Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome. Contacting them should be your first step.
National Family Empowerment Representative
Samantha Brant – Family & Community Engagement Manager, Rettsyndrome.org
[email protected] 1-913-221-8157
Family Empowerment Representative
Jessica Williams – volunteer Family Empowerment Representative,
[email protected], 1-501-472-3248
Treatment and Research Centers
Your child may be able to participate in studies and trials to advance treatment and knowledge of Rett syndrome. There are clinics specializing in Rett syndrome that can help you provide Rett-specific care for your child.
Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.
State Agencies & Resources
Local Service Agencies
Division of Developmental Disabilities Services (DDS)
The Division of Developmental Disabilities Services Children’s Services provides case management/care coordination for children birth to 21 years of age. The Division of DDS is responsible for the overall coordination of services for Arkansans with developmental disabilities. The Divisions of DDS Director’s office is the point of contact for the public.
Medical Home Arkansas
Visit Medical Home Arkansas Website
Medical Home Arkansas assists all families and health care professionals who provide nurture and care for children with special health care needs.
Visit MedicalHomeAr.org Website
MedicalHomeAr.org has county resource listings.
Family-2-Family Health Information Center of Arkansas (F2F HIC)
Visit Family-2-Family Health Information Center of Arkansas Website
The Family-2-Family Health Information Center of Arkansas (F2F HIC) is a non-profit family-run organization that assists families of children and youth with special health care needs (CYSHCN) and the professionals who serve them. They provide health-related support, information, resources and training.
Arkansas Disability Coalition
Visit Arkansas Disability Coalition Website
ADC Arkansas Disability Coalition Resources
Title V Children with Special Health Care Needs (CSHCN)
Visit Title V Children with Special Health Care Needs Website
Title V Children with Special Health Care Needs (CSHCN) Service Coordination staff consists of Registered Nurses, Social Workers and clerical support located in 16 DHS offices around the State of Arkansas.
The Arc Arkansas
Visit The Arc Arkansas Website
The Arc Arkansas provides supports, housing, advocacy, education and leadership to people with disabilities and their families.
Visit ARKids First Website
ARKids First health insurance provides two coverage options for Arkansas children. ARKids A is Medicaid for children and offers low-income families a comprehensive package of benefits. ARKids B provides coverage for families with higher incomes. You can get an ARKids First application by calling the toll-free hotline Monday through Friday from 8 a.m. until 4:30 p.m. You do not have to visit a DHS office. You can also apply online.
First Connections Program
Visit First Connections Program Website
The First Connections Program provides Early Intervention Services for children birth to 3 years of age. The DHS is the Lead Agency for the Program. The DDS is the division within DHS, which has administrative responsibility for implementation of the program. DHS Program Coordinators and a Program Administrator provide intake, service option presentations, individual social history development, referrals, transition to Early Childhood, individual service coordination (case management), obtaining and maintaining client data tracking information and case notes.
Special Education Coordinators
Centralized Intake and Referral / Consultant Unified Intervention Team (CIRCUIT)
Centralized Intake and Referral / Consultant Unified Intervention Team (CIRCUIT) connects parents, guardians, caregivers, school personnel, or any other concerned party to a regional cadre of special education consultants. CIRCUIT can assist in interventions for students with sensory disabilities, multiple physical disabilities, behavior, and autism spectrum disorders.
Arkansas Legal Services
Visit Arkansas Legal Services Website
Arkansas Legal Services has information on guardianship and provides legal aid.
Transition to Adult Services
Arkansas Transition Services
Visit Arkansas Transition Services Website
Arkansas Transition Services serves all 75 counties in Arkansas in an effort to improve transition outcomes for students with disabilities. Transition planning ensures that a student continues to receive the support needed from appropriate agencies, even if the plan is not for the individual to attend traditional college. Transition planning must begin by the first IEP held after the student reaches age 16.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Legal Resources & Information
Disability Rights Arkansas (DRA)
Visit Disability Rights Arkansas (DRA) Website
Disability Rights Arkansas (DRA) is the independent Protection and Advocacy system for persons with disabilities in Arkansas. DRA collaborates with other disability rights and civil rights organizations and agencies, the private bar and legal services to accomplish its goals and objectives.