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, International Rett Syndrome Foundation
[email protected] 1-913-221-8157
Family Empowerment Representative
Ariane McMahan – Volunteer Family Empowerment Representative, Fairfield, CT
[email protected] 1-203-520-5452
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
Network of Care for Behavioral Health
Visit Network of Care for Behavioral Health Website
Connecticut’s Network of Care for Behavioral Health promotes access to behavioral health care information for all residents of Connecticut. This Web site is a resource for individuals, families and agencies concerned with mental health and developmental disabilities. It provides information about services, laws, and related news, as well as communication tools and other features. Regardless of where you begin your search for assistance, the Network of Care helps you find what you need – it helps ensure that there is “No Wrong Door” for those who need services.
Visit ConneCT Kids Website
This site has a comprehensive list of special needs resources and supports for children in Connecticut.
Department of Developmental Services (DDS) Local Contacts
Visit Department of Developmental Services Local Contacts Website
The DDS provides support for adults and children with developmental disabilities.
Office of Protection and Advocacy for Persons with Disabilities (P&A)
Visit Office of Protection and Advocacy for Persons with Disabilities Website
P&A is an independent State agency created to safeguard and advance the civil and human rights of people with disabilities in Connecticut. P&A provides information, referral, and advocacy services; pursues legal and administrative remedies on behalf of people with disabilities; investigates allegations of abuse and neglect that arise in specific service settings or that affect individuals with particular disabilities; and provides education, information and training on disability rights.
View Application information for HUSKY
View Online Access for HUSKY
Connecticut HCBS Waiver Guidebook
View the Connecticut HCBS Waiver Guidebook
Connecticut currently has six waivers that are open to children. All are HCBS 1915(c) Medicaid waivers. Three of these programs waive parental income; we do not know the status of the others. For general information on Connecticut’s waivers for people with developmental disabilities, see Connecticut’s HCBS Waiver Guidebook.
View CYHCN Children & Youth with Special Health Care Needs and Connecticut's Medical Home Initiative
View CYHCN Children & Youth with Special Health Care Needs and Connecticut’s Medical Home Initiative
Children & Youth with Special Health Care Needs (CYSHCN) are those who are at increased risk for a chronic physical, developmental, behavioral or emotional condition and require services beyond that required for children in general. For more information call CYSHCN to speak to a CDI care coordinator.
View DDS Regional Waiver Coordinators
View DDS Regional Waiver Coordinators
Waiver Services is responsible for the operation of the DDS Home and Community Based Services (HCBS) Waivers, the development of new and renewal waiver applications, and decisions regarding requests for new or additional waiver services. Contact your regional Waiver Coordinator.
Individual and Family Support Waiver
View Individual and Family Support Waiver
Individual and Family Support Waiver Provides direct services and supports to people who live in their family home. It is approved for individuals who do not require 24- hour paid supports. (ages 18 – no max age), and IID (ages 3 – no max age). There is a waitlist. Contact your local DDS helpline to apply. [email protected]
Employment and Day Supports Waiver
View Employment and Day Supports Waiver
Employment and Day Supports Waiver Targets young adults transitioning from school to work with similar services as the other DDS waivers. Ages 18 – no max age and ID ages 3 – no max age. Contact your local DDS helpline to apply. [email protected]
Comprehensive Supports Waiver
View Comprehensive Supports Waiver
Comprehensive Supports Waiver provides direct services and supports for people who live in licensed settings, and those who live in their family home and require a level of support not available under the IFS waiver, usually due to significant behavioral, medical and/or physical support needs and/or the absence of available natural supports. (18 yrs. – no max age) and for IID (3 yrs. – no max age). There is a waitlist. Contact your local DDS helpline to apply. [email protected]
Transition to Adult Services
CT Transition Services
Visit CT Transition Services Website
Through your local school district, the PPT must develop a plan to help your child be prepared for life after school. This written plan, called an Individual Transition Plan (ITP), is developed at the annual PPT following your child’s 15th birthday (or younger, if appropriate). If your child is involved with an adult agency such as the DDS or the BRS, a representative or your child’s case manager from that agency should attend the meeting. All DDS regions have transition coordinators who may be able to provide assistance to your family as you navigate through the transition process.
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
In addition to conducting investigations, educating policy makers and challenging discriminatory barriers in court, P&A helps individuals with disability understand and exercise their rights. If you contact P&A, they can give you information about disability rights, refer you to experts and resources, and help you with your advocacy efforts.