Connecticut Resources

Family Empowerment Representatives | Treatment and Research Centers | CT 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

Ariane McMahan, volunteer Family Empowerment Representative, Fairfield,CT arianemcmahan0218@gmail.com 1-203-520-5452


Treatment and Research Centers


Clinics

Signifies site involved with the Natural History Study

The objective of this study is to gather as much data as possible about children and adults with Rett syndrome. This includes information about nutrition, development, and height & weight measurements. This data will stimulate more clinical research and better prepare us for future clinical trials. 

Children's Hospital at Montefiore (CHAM)

 1-347-640-2671  1-718-920-4378

This is the only center for Rett syndrome in the tri-state area and is offered through the Division of Neurology.   rett@montefiore.org

Rett Syndrome Program/ Children's Hospital Boston 

1-617-355-5230

The Rett Syndrome Program brings together a team of professionals who specialize in treating patients with Rett syndrome. Acting Clinic Director is Dr. David Urion (specializing in neurology) and the Research Program Director is Dr. Mustafa Sahin (specializing in neurology).  To contact the Rett Syndrome Program, email RettResearch@childrens.harvard.edu or call. 


 State Agencies - Connecticut


Local Service Agencies

Network of Care for Behavioral Health

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.

ConneCT Kids

 This site has a comprehensive list of special needs resources and supports for children in Connecticut.

Department of Developmental Services (DDS) Local Contacts

1-866-737-0330

The DDS provides support for adults and children with developmental disabilities. 

Office of Protection and Advocacy for Persons with Disabilities (P&A)

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.

The Consumer Information Unit

 1-800-842-7303

The Consumer Information Unit is the entry point to P&A. 


Handicap Placard

Local DMV Offices 

The Department of Motor Vehicles issues permanent parking permits for individuals that have a qualifying disability. The application must be signed by a medical professional. dmv.hpapp@ct.gov


State Medicaid 

HUSKY Health

 1-877-284-8759

In Connecticut, HUSKY Health encompasses Medicaid and the Children’s Health Insurance Program. The Department of Social Services partners with Access Health CT, the state’s health insurance marketplace, in HUSKY Health enrollment. They  coordinate medical, dental, pharmacy, behavioral health and other benefits. 

Application information for HUSKY

1-855-626-6632

Online Access for HUSKY

 1-855-805-4325

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.

CYHCN Children & Youth with Special Health Care Needs and Connecticut's Medical Home Initiative

1-800-505-7000

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

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.

Katie Beckett Waiver

1-800-445-5394 then #3

Katie Beckett Waiver Provides case management to individuals with physical disabilities ages 0-22. There is a waitlist.  Apply by phone. 

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.  dds.nr.ifshelpline@ct.gov

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.  dds.nr.ifshelpline@ct.gov

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.  dds.nr.ifshelpline@ct.gov

CT Medicaid Info

 


Early Intervention

The Birth to Three System

1-866-888-4188

The Birth to Three System assists and strengthens the capacity of families to meet the developmental and health-related needs of infants and toddlers who have delays or disabilities. The website has local contact information. 

Early Childhood Special Education

1-860-713-6941

Early Childhood Special Education provides federal funds to states through the “Preschool Grants Program.”  The funds are intended to help ensure that all eligible children with disabilities, ages 3 through 5, receive a free appropriate public education that has been individually designed to meet the child’s unique needs. This program is currently part of the State Department of Education. Services are provided by local and regional school districts. 


Education

CT Special Education

Special education may include special classes, programs, and/or services to help the child take part in the regular classroom curriculum. The first step is to get a "referral to special education," which is a written request for an evaluation. A Planning and Placement Team or "PPT" will review the referral. You may write a letter or use your school district's referral form if they have one. Make a copy of your letter or form and then send it by certified mail or deliver it in person to your local school district. Once a referral has been made, the school should schedule a Planning and Placement Team (PPT) meeting. All decisions about special education, including whether to evaluate your child, are decided at a PPT meeting. A PPT meeting is also known as an Individualized Education Program (IEP) meeting. The next step is to create a plan for your child's education called an Individualized Education Program or IEP.

SERC

SERC provides resources, professional development, and a centralized library to educators, families, and community members in collaboration with the Connecticut Department of Education and other partners.


Conservatorship

Connecticut Conservatorship

Conservatorship is a legal proceeding in which an individual or agency is appointed by a court to be responsible for a person who needs assistance in activities of daily living. Families should check with their child's Regional Center, high school and county Superior Court Probate Office for information on low/no cost Self Help Clinics. This process should begin approximately 6 months before the 18th birthday.


Transition to Adult Services

CT Transition Services

1-866-737-0330

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 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

P&A

1-800-842-7303

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.


Recreation


More Parent Recommendations