Maryland Resources

Family Empowerment Representatives | Treatment and Research Centers | MD 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

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


Treatment and Research Centers


Clinics & Clinical Trials

Kennedy Krieger Institute /Johns Hospitals School of Medicine

1-410-474-2664

Dr. Sakkubai Naidu is the director of the Rett Syndrome Research Project through the Department of Neurogenetics. 


State Agencies - Maryland


 Local Service Agencies

Local Dept of Social Services Contacts

 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 Adminstration (DDA)

The DDA provides services for developmentally disabled individuals. There are 4 regional offices and within those, DDA agencies are county specific.

Regional DDA Offices

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.


Handicap Placard

Maryland Motor Vehicle Administration( MVA)

MVA issues handicap placards. 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


State Medicaid 

Local Dept of Social Services Contacts

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

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

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.

An Overview of Medicaid Long Term Care and Waiver Programs

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


Early Intervention

Maryland's Infants and Toddler Program (MITP)

MITP offers early intervention services for children with developmental delays or disabilities. Early intervention services are county specific.

County MITP Contacts


Education

Maryland Department of Education

Maryland Department of Special Education Center

Special Education Directory


Conservatorship

Maryland Disability Law Center (MDLC)

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

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.


Parent Recommendations

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 Schreiber is a Neurologist  with Children's National Medcial Center. 1-888-884-2327

Dr. Marijean Miller

Dr. Marijean Miller is an Opthamologist with Children's National Medical Center 1-888-884-2327

Dr. Matthew Oetgan

Dr. Matthew Oetgan is an Orthopedist with Children's National Medical Center 1-888-884-2327

Dr. Lauren Lewis

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

ClinicalTrials.gov

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


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

Rebecca Leonard, PT & Pam Diener, OT

Rebecca Leonard, PT & Pam Diener, OT are with Early Intervention Associates in Rockville, MD. 1-301-468-9343

Lift Me Up Therapeutic Riding Center

 info@liftmeup.org  1-703-759-6221


Legal Resources

Maryland Coalition for Inclusive Education (MCIE)

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

Maryland Disability Law Center (MDLC)

MDLC assists with advancing the rights of people with disabilities. They provide free legal services to Marylanders. 1-800-233-7201


Recreation

Keen Recreation

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

Offers adaptive ballet - your child does not need to be ambulatory for this activity. info@marylandyouthballet.org  11-301-608-2232

JCC Summer Camp

1-301-881-0100


More Parent Recommendations

Jill's House

Jill's House provides weekend respite care. They will accept VA Medicaid but individuals without VA Medicaid pay cash on sliding scale. 1-703-639-5660

ARC of Montgomery County

1-301-984-5777 4