Rhode Island

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
sbrant@rettsyndrome.org  1-913-221-8157

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

Rhode Island Assistive Technology Access Partnership (ATAP)

Visit Rhode Island Assistive Technology Access Partnership (ATAP) Website
1-401-462-7873
The Rhode Island Assistive Technology Access Partnership (ATAP) is designed as a statewide partnership of organizations, each with a targeted assistive technology focus, working together to improve access to and acquisition of assistive technology for individuals with disabilities. Services include Device Demonstration, Device Loan, Device Re-Use and Training, Public Awareness, Collaboration, Information & Referral.  For more information contact kathleen.grygiel@ors.ri.gov.

Division of Developmental Disabilities (DDD)

Visit Division of Developmental Disabilities (DDD) Website
The Division of Developmental Disabilities (DDD) is responsible for planning, providing and administering a community system of services and supports for adults with developmental disabilities (DD).

To Apply for DDS Services

Click here To Apply for DDS Services
1-401-462-3421
To apply for DDD services, complete the Application for Services and all other required forms (see website) and mail to BHDDH–DDD, Simpson Hall – Eligibility Unit, 6 Harrington Rd, Cranston, RI 02920. If you have any questions while completing these forms, please and ask to speak with an eligibility caseworker.

State Medicaid

Rhode Island Medicaid Programs for Children with Special Healthcare Needs

Visit Rhode Island Medicaid Programs for Children with Special Healthcare Needs Website
RI Medicaid provides health care services and supports for people with disabilities and special needs.  Services may include comprehensive health care, premium assistance and/or long-term services and supports, depending on a person’s needs.

Apply for Medicaid Online

Click here to Apply for Medicaid Online
This website enables you to compare available health insurance options, purchase health insurance, and determine if you are eligible for financial assistance in paying for coverage. In addition, you can apply for human service programs for you and your household (such as Food Assistance, Cash Assistance, etc.).

RIte Share

Visit RIte Share Website
RIte Share is RI’s Premium Assistance Program that provides health coverage through an employer’s health insurance. The State will pay all or part of the worker in the family’s share of the cost for the employer health insurance coverage.

Rite Care and Rite Share Application

Visit Rite Care and Rite Share Application Website
1-855-609-3304
Rite Care and Rite Share Application   There is a new on-line application located at the website Healthy Rhode that will take you step-by-step through the application process.  You can also apply in person or by mail at one of the Department of Human Services (DHS) field offices or the Contact Center. Call if you need help finding a place to apply or with completing the application.

Click to view DHS Field Offices

Early Intervention

Early Intervention Providers

Visit RI Early Intervention Training & Technical Assistance Project Website
The Paul V. Sherlock Center on Disabilities, founded at Rhode Island College in 1993, is a University Center on Excellence in Developmental Disabilities Education, Research, & Service. Areas of emphasis include Early Intervention and Education, Transition, Employment and Adult Life and Higher Education.

Click to view Early Intervention Providers

Education

Rhode Island Department of Education (RIDE)

Visit Rhode Island Department of Education (RIDE) Website
1-401-222-8333
Rhode Island Department of Education (RIDE) administers Special Education. The goal of Special Education is to improve the academic, social and post school success of students with disabilities ages 3 to 21. Students eligible for special education require specially designed instruction and related services as needed to meet their unique needs.

View Rhode Island School Districts

Conservatorship

Rhode Island Bar Association 

Visit Rhode Island Bar Association Website
A guardianship or conservatorship is a legal system by the Probate Court that bestows upon an individual the legal power to make decisions for another individual who is incapable of making decisions for him or herself.

Transition to Adult Services

Rhode Island Department of Elementary and Secondary Education

Visit Rhode Island Department of Elementary and Secondary Education Website
1-401-222-8333
The Rhode Island Department of Elementary and Secondary Education, Office of Student, Community and Academic Supports has actively worked with students, parents, local school districts, and other state and local agencies to promote an effective statewide system of secondary transition services for students with disabilities. This page provides information on Secondary Transition, some of the system structures RIDE has employed to improve transition outcomes for students in Rhode Island and links to sources of information for students, parents and professionals.

Handicap Placard

 Rhode Island Division of Motor Vehicles 

Visit Rhode Island Division of Motor Vehicles Website
If you are a resident of RI and you have a disability, you can apply for a handicapped parking placard from the Rhode Island Division of Motor Vehicles (DMV). The DMV issues several types of placards, including temporary, permanent, and disabled veteran placards. To get your disability placard, you must apply by mail. You will need to complete the New/Renewal Disability Parking Placard Application, and have it signed by a licensed physician with a RI medical license. Send the completed application to: Division of Motor Vehicles, Disability Parking Placards Office, 600 New London Ave, Cranston, RI 02920.

New/Renewal Disability Parking Placard Application 

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org.

Additional Resources

RI Early Intervention Training & Technical Assistance Project 

Visit RI Early Intervention Training & Technical Assistance Project Website
The Paul V. Sherlock Center on Disabilities, founded at Rhode Island College in 1993, is a University Center on Excellence in Developmental Disabilities Education, Research, & Service. Areas of emphasis include Early Intervention and Education, Transition, Employment and Adult Life and Higher Education.

Rhode Island Rettsyndrome.org Families Facebook page

Click and ask to join!