Maryland

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
sbrant@rettsyndrome.org  1-913-221-8157

Family Empowerment Representative

Elizabeth Calabrese, volunteer Family Empowerment Representative,
Prince Frederick, MD  Betrout4@gmail.com 1-410-474-2664

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.

Clinical Trials

Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.

Clinics

Kennedy Krieger Institute /Johns Hospitals School of Medicine

Visit Kennedy Krieger Institute /Johns Hospitals School of Medicine Website
1-410-474-2664

State Agencies & Resources

Local Service Agencies

Local Dept of Social Services Contacts

Visit Local Dept of Social Services Contacts Website
In each Maryland county and Baltimore City, the local department of social services administers public assistance programs for low-income Marylanders including Medicaid.

Developmental Disabilities Administration (DDA)

Visit Developmental Disabilities Administration (DDA) Website
The DDA provides services for developmentally disabled individuals. There are 4 regional offices and within those, DDA agencies are county-specific.
View Regional DDA Offices
View Application for DDA Services
Your application can be sent to your regional office. You should receive a letter in 5-7 days informing you of receipt of your application.

State Medicaid

Local Dept of Social Services Contacts

Visit Local Dept of Social Services Contacts Website
In each Maryland county and Baltimore City, the local department of social services administers public assistance programs for low-income Marylanders including Medicaid.

The Model Waiver

Visit The Model Waiver Website
1-410-987-1048 (Baltimore area)
1-301-621-7830 (Washington)
The Model Waiver provides case management, certified nursing assistant, medical day care, principal physician’s participation in the plan of care meeting, private duty nursing for medically fragile individuals, ages 0 – no max age. Parental income and assets are waived during the financial eligibility process. There is a waiting list. Contact the Coordinating Center for Home and Community Care (CCHCC) offices listed above for more information.

Community Pathways Waiver

View Community Pathways Waiver
This waiver is administered by the DDA and allows usual rules to be waived in order to provide services.  There is a wait list. Apply through your local DDA Office.

Overview of Medicaid Long Term Care and Waiver Programs

View An Overview of Medicaid Long Term Care and Waiver Programs

Medical Day Care Services Waiver 

View Medical Day Care Services Waiver
This waiver provides medical day care for aged individuals (65yrs – no max age) and physically disabled (16-64). There is a wait list. Apply through your local health department’s AERS Program.

Maryland Health Departments

Visit Maryland Health Departments Website

Conservatorship

Maryland Disability Law Center (MDLC)

Visit Maryland Disability Law Center Website
1-410-727-6352
1-800-233-7201
Maryland Disability Law Center (MDLC) MDLC can help with conservatorship.

Transition to Adult Services

Maryland Transitioning Youth

Visit Maryland Transitioning Youth Website
Transition planning is when a student with a disability, the school system, and service providers, begins to plan for life after high school. This includes planning for college, work, transportation, housing, health care, and daily living. Transition planning should begin by age 14.

Handicap Placard

Maryland Motor Vehicle Administration (MVA)

Visit Maryland Motor Vehicle Administration Website
MVA issues handicap placards. The application must be signed by a physician and mailed or taken to your local MVA office. Placards can be renewed by mail with a physician signature.
Application for Handicap Placard in Maryland

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

Medical Professionals

Dr. John Schrieber

Dr. John Schrieber, Neurologist  with Children’s National Medical Center, 1-888-884-2327

Dr. Marijean Miller

Dr. Marijean Miller, Ophthalmologist with Children’s National Medical Center, 1-888-884-2327

Dr. Matthew Oetgan

Dr. Matthew Oetgan, Orthopedist with Children’s National Medical Center, 1-888-884-2327

Dr. Lauren Lewis

Dr. Lauren Lewis, Pediatric Dentist with EJL Dental in Rockville, MD, 1-301-881-6170

Therapy

Pam Diener, OT

1- 240-381-1763

Lift Me Up Therapeutic Riding Center

Visit Lift Me Up Therapeutic Riding Center Website
info@liftmeup.org 
1-703-759-6221

Legal Resources & Information

Maryland Coalition for Inclusive Education (MCIE)

Visit Maryland Coalition for Inclusive Education (MCIE) Website

MCIE can assist with education related legal issues. mcie@mcie.org  1-410-859-5400

Maryland Disability Law Center (MDLC)

Visit Maryland Disability Law Center (MDLC) Website
MDLC assists with advancing the rights of people with disabilities. They provide free legal services to Marylanders. 1-800-233-7201

Recreation

Keen Recreation

Visit Keen Recreation Website
Keen accepts children and youth with physical and developmental abilities into their athletic program. All activities are free of charge. 1-301-770-3200

Special Olympics in Montgomery County

Visit Special Olympics in Montgomery County Website

Maryland Youth Ballet Music and Motion

Visit Maryland Youth Ballet Music and Motion Website
Offers adaptive ballet – your child does not need to be ambulatory for this activity. info@marylandyouthballet.org  1-301-608-2232

JCC Summer Camp

Visit JCC Summer Camp Website
1-301-881-0100

Additional Resources

ARC of Montgomery County

Visit ARC of Montgomery County Website
1-301-984-5777