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
[email protected] 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.
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
Aging and Disability Resources Centers/AAAs (ADRC)
Visit Aging and Disability Resources Centers/AAAs (ADRC) Website
Maine has 5 ADRC locations that are able to answer questions and provide services for persons with a lifelong disability.
Office of Aging and Disability Services (OADS)
Visit Office of Aging and Disability Services (OADS) Website
Office of Aging and Disability Services (OADS) coordinates programs and benefits for the aging and disabled population of Maine.
Department of Health and Human Services (DHHS)
Visit DHHS Offices Website
DHHS provides services for disabled individuals and their families.
Child and Family Services Children's Behavioral Health
Visit Child and Family Services Children’s Behavioral Health Website
Child and Family Services Children’s Behavioral Health services focus on behavioral health treatment and services for children from birth up to age 21. Services include providing information and assistance with referrals for children and youth with developmental disabilities/delays, intellectual disability, Autism Spectrum Disorders, and mental health disorders.
The Dream Factory - York
Katie Beckett Waiver
Visit Katie Beckett Waiver Website
Katie Beckett is a MaineCare option for children with serious health conditions. It is one of the many ways your child can get MaineCare. To apply, contact your local DHHS office. You will need to fill out the MaineCare application; make sure to indicate that your child is disabled.
Visit MaineCare Website
MaineCare is Maine’s Medicaid program available to people with special health care needs. To apply for MaineCare, go to My Maine Connection to check eligibility OR print an application and mail it to 114 Corn Shop Lane, Farmington, ME 04938.
My Maine Connection
Printable application for MaineCare
Children's Behavioral Health
Visit Children’s Behavioral Health Website
Children’s Behavioral Health provides services for children ages five through 21.
Child Development Services (CDS)
Visit Child Development Services (CDS) Website
CDS provides both Early Intervention (birth through age two) and Free and Appropriate Public Education (FAPE – ages three through five). Screenings and evaluations are provided in order to identify children who are eligible for services. The CDS has nine sites in Maine.
CSD information for families
Maine Department of Education Office of Special Services
Visit Maine Department of Education Office of Special Services Website
Maine Department of Education Office of Special Services works to guarantee delivery of special education services.
Transition to Adult Services
Visit Access Maine Website
Access Maine provides information for transition planning for children in special education. Special education transition planning begins at age 14.
Maine Transition to Adulthood
Visit Transition to Adulthood Website
Transition to Adulthood can help transition your child from child services to adult services in Maine. Fill out the Early Notification Form when your child turns 16.
Access Maine Toolkit
Visit Access Maine Toolkit Website
Access Maine Toolkit is a transition planning guide for families in Maine.
Private Health Insurance Premium Program (PHIP)
Visit Private Health Insurance Premium Program (PHIP) Website
PHIP pays for of private medical insurance and MaineCare would act as a secondary insurance. In order to qualify, you must be enrolled in MaineCare and have access to insurance that MaineCare considers cost effective.
Bureau of Motor Vehicles
Visit Bureau of Motor Vehicles Website
To obtain a handicap placard, fill out the Disability Plates/Placard application to the BMV. Handicap placards must be renewed every 4 years. There are currently no fees to obtain a placard in Maine.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Honey Bee Pediatric Therapy
Visit Honey Bee Pediatric Therapy Website
Brilliant Smiles Dental Hygiene
Visit Brilliant Smiles Dental Hygiene Website
Riding to the Top Therapeutic Riding Center
Visit Riding to the Top Therapeutic Riding Center Website
Maine Rettsyndrome.org Facebook Families Page
The Pine Tree Society
Visit The Pine Tree Society Website
The Pine Tree Society helps people in Maine with disabilities lead richer, more socially connected lives. Their service areas include assistive technology, communication, community supports and adaptive recreation. They make special needs equipment available at much lower prices than can be found elsewhere, including things like activity chairs, “safe” beds and more. They also run summer camps for the whole family!
Visit Camp CaPella Website
Camp CaPella is a lakefront summer camp at Phillips Lake that provides diverse recreational and educational opportunities for children and adults with disabilities. Camp CaPella is for all campers regardless of ability, to be allowed to enjoy a summer program. We offer learning experiences, recreational activities, and fun! We hope that this safe environment will maximize their abilities and willingness for participation, and is appropriate to foster their self-awareness, growth, and development. It is also a retreat offered to administration, staff, and clients of other agencies and programs in the community that serve the needs of children and adults with disabilities. Camp CaPella offers year-round recreational and educational opportunities outside of the Phillips Lake facility.