Maryland
- Family Empowerment Representatives
- Treatment and Research Centers
- State Agencies & Resources
- Parent Recommended Resources
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, International Rett Syndrome Foundation
[email protected] 1-913-221-8157
Family Empowerment Representative
Elizabeth Calabrese, volunteer Family Empowerment Representative,
Prince Frederick, MD [email protected] 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
Clinic Name: Rett and Related Disorders Clinic
Medical Director: Connie Smith-Hicks, MD, PhD
Clinic Address: 801 North Broadway, Baltimore, MD 21205
Clinic Phone: (443) 923-2778
Clinic Email: [email protected]
Part of the IRSF Center of Excellence Network
CLINIC WEBSITE
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
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
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
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
[email protected]
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. [email protected] 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
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. [email protected] 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