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.

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

Danielle McAllister, volunteer State Resource rep, Norway, ME stilljammin111@yahoo.com 1-207-743-9698


Evie Swan, volunteer Family Empowerment Representative, Manchester, Maine  evielynn6@gmail.com  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) 

1-207-287-9200

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)

1-207-287-3707

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.


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

1-855-797-4357

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)

1-800-977-6740

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)

1-207-624-6660

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 


Education

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

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

1-800-639-2420

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 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)

Honey Bee Pediatric Therapy   Norway, Maine

 1-207-739-2021

Brilliant Smiles Dental Hygiene, Oxford, Maine

1-207-539-8188

Riding to the Top Therapeutic Riding CenterWindham, Maine

1-207-892-2813


Legal Resources


Recreation


More Parent Recommendations

Maine Rettsyndrome.org Facebook Families page

The Pine Tree Society

1-207-443-3341

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!