Maine Resources

Family Empowerment Representatives  | Treatment and Research Centers ME 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.

Samantha Brant - Family & Community Engagement Manager,

Danielle McAllister, volunteer State Resource rep, Norway, ME 1-207-743-9698

Evie Swan, volunteer Family Empowerment Representative, Manchester, Maine  1-775-200-8788

Treatment and Research Centers

Clinics & Clinical Trials - none at this time

State Agencies - Maine

Local Service Agencies

Aging and Disability Resources Centers/AAAs (ADRC) 

Maine has 5 ADRC locations that are able to answer questions and provide services for persons with a life long disability.

Office of Aging and Disability Services (OADS) 


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)


DHHS provides services for disabled individuals and their families. 

DHHS Offices

Child and Family Services Children's Behavioral Health

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 - Portland

The Dream Factory - York

Handicap Placard 

Bureau of Motor Vehicles 

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.

Disability Plates/Placard Application

State Medicaid 

Katie Beckett Waiver

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.



MaineCare 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

Children's Behavioral Health provides services for children ages five through 21.

Transition to Adulthood

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.

Private Health Insurance Premium Program (PHIP)


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. 

Early Intervention

Child Development Services (CDS)


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. 

CDS Locations

CSD information for families 


Maine Department of Education Office of Special Services

Maine Department of Education Office of Special Services works to guarantee delivery of special education services.

Maine Department of Education Programs


Conservatorship is a legal proceeding in which an individual or agency (to be known as the "conservator") is appointed by a court to be responsible for a person who needs assistance in daily living. Check with your child's high school or your county Superior Court Probate Office for information on Self Help Clinics. This process should start 6 months before the 18th birthday.

Information on Adult Protective Services and Guardianship 

Adult Guardianship Alternatives Information and FAQ about guardianship in Maine 

Transition to Adult Services

Access Maine

Access Maine provides information for transition planning for children in special education. Special education transition planning begins at age 14.

Access Maine Toolkit


Access Maine Toolkit is a transition planning guide for families in Maine. 

Parent Recommendations

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

Medical Professionals 

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

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

Honey Bee Pediatric Therapy   Norway, Maine


Brilliant Smiles Dental Hygiene, Oxford, Maine


Riding to the Top Therapeutic Riding CenterWindham, Maine


Legal Resources


More Parent Recommendations

Maine Facebook Families page

The Pine Tree Society


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! 

Camp CaPella

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 afforded an opportunity to enjoy a summer program. We offer learning experiences, recreational activities, and fun! It is our 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.