Rhode Island Resources

Family Empowerment Representatives  | Treatment and Research Centers | RI State Agencies | Parent Recommendations


 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.

Brittney Gibson, Rettsyndrome.org  bgibson@rettsyndrome.org  1-800-818-7388


Treatment and Research Centers

Clinics & Clinical Trials - none at this time


 State Agencies - Rhode Island


Local Service Agencies

Rhode Island Department of Human Services’ Children with Special Needs

Services for children with special needs include the RI Medical Assistance Program, paying for medical and health related services for Children with Special Health Care Needs who qualify; CEDARR Family Centers, providing support and respite services to qualified families with children with special needs, and to the children Home Based Therapeutic Services, Kids Connect (specialized services at licensed childcare centers), and Personal Assistance Services and Supports; an Early Intervention Program, promoting the growth and development of infants and toddlers who have a developmental disability or delay in one or more areas; and Katie Beckett.

Office of Rehabilitation Services (ORS)

The Office of Rehabilitation Services (ORS) provides a wide variety of services to Rhode Islanders with disabilities.

Rhode Island Assistive Technology Access Partnership (ATAP)

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)

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

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. 

Application for DDD Services

Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH)

This is a listing of various websites for the federal government, national agencies and organizations across the country that have information and resources relating to developmental disabilities.


Handicap Placard

 Rhode Island Division of Motor Vehicles 

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 


State Medicaid 

Rhode Island Medicaid Programs for Children with Special Healthcare Needs

RI Medicaid provides health care services and supports for people with disabilities and special needs.  Services may include comprehensive heath care, premium assistance and/or long-term services and supports, depending on a person's needs.

RIte Care Health Plan

Rhode Island’s Medicaid managed care plans for families on the RI Works Program, pregnant women, and children and, in some cases, their parents or caretakers. Once determined eligible, you will be enrolled in a participating health plan: UnitedHealthcare Community Plan or Neighborhood Health Plan of RI.The Department of Human Services will enroll children with special health care needs who are eligible for Medical Assistance into a participating RIte Care Health Plan. The link contains information about both programs. 

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.).

Medicaid Early, Periodic, Screening, Diagnosis, and Treatment (EPSDT)

 If medically necessary, all children enrolled in Medicaid from birth to age 21 may qualify for additional health services and supports through the EPSDT benefit.

Katie Beckett Waiver

1-401- 462-0633 Parent Consultant

Katie Beckett is an eligibility category that allows certain children under age 19 who have long term disabilities or complex medical needs to become eligible for Medicaid coverage. Katie Beckett eligibility enables children to be cared for at home instead of in an institution. With Katie Beckett, only the child’s income and resources are used to determine eligibility. To apply for Medicaid through the Katie Beckett provision, a parent or guardian would need to complete ALL the following forms in the application packet. They are all available online.  For information on Katie Beckett, call the  Parent Consultant. 

RIte Share

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

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.

DHS Field Offices


Early Intervention

Rhode Island's Early Intervention Program

Rhode Island's Early Intervention Program promotes the growth and development of infants and toddlers  (under age 3) who have a developmental disability or delay in one or more areas. To apply, contact an Early Intervention Provider in Rhode Island. 

Early Intervention Providers

RI Early Intervention Training & Technical Assistance Project 

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.


Education

Rhode Island Department of Education (RIDE)

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.

IEP Information

The foundation of the program for the student with a disability is the Individualized Education Program (IEP) developed by the IEP team. In developing the IEP, the team should keep as its focal point the RI Common Core State Standards and other standards of the general education curriculum that all students, including students with disabilities, are required to meet.

RIDE Special Education Resources

RIDE’s Office of Student, Community and Academic Supports (OSCAS) is dedicated to improving results for infants, toddlers, children and youth with disabilities ages birth through 21.

Rhode Island School Districts


Conservatorship

Rhode Island Bar Association 

 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.

RIDLC Guardianship Guide 


Transition to Adult Services

Starting POINTS for Parents

1-401-270-0101

Starting POINTS for Parents is an online community for families and caregivers of children with disabilities providing opportunities for information, networking, training and support for the educational and developmental needs of their children.

Health Care Transition Planning for Teens with Special Health Care Needs

Rhode Island Department of Elementary and Secondary Education

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. 


Parent Recommendations

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


 Medical Professionals

ClinicalTrials.gov  

This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.


Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)


Legal Resources

Rhode Island Disability Law Center (RIDLC)

Rhode Island Disability Law Center (RIDLC) provides free legal assistance to persons with disabilities. Services include individual representation to protect rights or to secure benefits and services; self-help information; educational programs; and administrative and legislative advocacy


Recreation


More Parent Recommendations

RI Early Intervention Training & Technical Assistance Project 

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!