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

Shelly Waterman, volunteer Family Empowerment Representative
[email protected]  1-802-343-6775

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.

Clinical Trials

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

Office of Children With Special Health Needs (CSHN)

Visit Office of Children With Special Health Needs (CSHN) Website
The Office of Children With Special Health Needs (CSHN) provides a number of services to Vermont children – birth to age 21 – who have complex health conditions, and to their families.

State Medicaid

Children's Personal Care Services (CPCS)

Visit Children’s Personal Care Services (CPCS) Website
Children’s Personal Care Services (CPCS) is a state plan Medicaid program available to children under the age of 21, with a significant disability or health condition that substantially impacts care giving needs and/or the development or self-care needs.  The Vermont Department of Health oversees CPCS.  In order to apply, the family and child must work with an individual trained to complete the CPCS application. Staff at each Designated Agency and many of the Specialized Services Agencies have been trained to complete the CPCS application and are available to assist families to apply for this support.

Katie Beckett and Disabled Children's Home Care (DCHC)

1-800-250-8427 – Health Access Member Services Unit
Katie Beckett and Disabled Children’s Home Care (DCHC) is a program enabling children with disabilities who might otherwise not qualify to obtain Medicaid EPSDT services. The parent’s income and resources are NOT counted, only the CHILD’S income and resources are counted toward eligibility. To qualify, the child must be under the age of 19 and have a disability. The child must need a level of care given in hospitals, nursing homes, or in-patient care facilities. You can apply by calling The Health Access Member Services Unit. Ask for the application package specifically for the Katie Beckett Program. They will send you the forms.

Visit Vermont Health Connect Website

Visit Vermont Health Connect Website
Vermont Health Connect has information on all health care plans in Vermont.

Early Intervention

Children's Integrated Services (CIS)

Visit Children’s Integrated Services (CIS) Website
Children’s Integrated Services (CIS) offers early intervention, family support, and prevention services that help ensure the healthy development and well-being of children, pre-birth to age 5.  Services are available at low or no cost to families. Contact your local CIS Coordinator (below).

Visit Children’s Integrated Services Coordinators Website


Vermont Family Network Guardianship Resources

Visit Vermont Family Network Guardianship Resources Website

Transition to Adult Services

Transition to Adulthood Toolkit

Visit Transition to Adulthood Toolkit Website

If you have favorite resources to share with others, please email that information and your experience to [email protected].

Additional Resources