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

Misty Newman, volunteer Family Empowerment Representative,
[email protected] 1-601-754-4096

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.

State Agencies & Resources

Local Service Agencies

Children's Medical Program (CMP)

The MSDH Children’s Medical Program provides family-centered care coordination services for children and youth(up to age 21) with special health care needs (CYSHCN).  CMP will work with you and your health providers to arrange and organize services, as well as, identify needs and resources to improve the health and well-being of your child.

Applying for CMP

Beginning January 2016, an Intake Assessment replaces the CMP application. Intake Assessments can be completed by phone in the MSDH Central office or at a county health department.

View County Health Departments

Disability Determination Services (DDS)

Visit Disability Determination Services Website
Disability Determination Services (DDS) is an agency in the Mississippi Department of Rehabilitation Services (MDRS) which operates in a partnership with the Social Security Administration (SSA) to make disability decisions on Social Security and Supplemental Security Income disability claims.  This office handles claims from all 23 SSA offices in Mississippi.

Mississippi Society For Disabilities

Visit Mississippi Society For Disabilities Website

State Medicaid

Disabled Child Living at Home Waiver

View Disabled Child Living at Home Waiver
The Disabled Child Living at Home (DCLH) or “Katie Beckett” group is a special eligibility category that allows certain disabled children who are residents of Mississippi with long-term disabilities or complex medical needs, living at home with their families, to obtain Mississippi Medicaid eligibility. Qualification is not based on a diagnosis or disability alone, but the child’s medically documented institutional level of care needs from the preceding 12 months.

Apply for DCLH

Apply for DCLH
To Apply for DCLH, complete the Medicaid application form for aged, blind and disabled individuals. You can also call or visit your local Medicaid Regional Office. The Medicaid Regional Office will determine eligibility and will send you a notice with the agency’s decision. If denied, the decision can be appealed through a state level hearing process.

Independent Living Waiver

View Independent Living Waiver
The Independent Living Waiver is a home and community-based waiver that provides services to beneficiaries who, but for the provision of such services would require the level of care found in a nursing facility.  Eligibility is limited to individuals age 16 years old or older, who have severe orthopedic and/or neurological impairments. Individuals must also be medically stable and be able to express ideas and wants either verbally or nonverbally with caregivers, personal care attendants, case managers, or others involved in their care.  There is a waiting list for this waiver.

View Intellectual Disabilities/Developmental Disabilities Waiver

View Intellectual Disabilities/Developmental Disabilities Waiver
The ID/DD Waiver provides services to individuals who, but for the provision of home and community-based services, would require placement in an Intermediate Care Facility for Individuals with Intellectual Disabilities. Individuals in this program must qualify for one of the following eligibility categories: Supplemental Security Income (SSI), Temporary Assistance for Needy Families (TANF), Disabled Child Living at Home or Income up to 300% of the SSI federal benefit rate.

Department of Mental Health Regional Centers

View Department of Mental Health Regional Centers
To apply for the ID/DD Waiver, you must first apply at a Department of Mental Health Regional Center.

Mississippi Youth Programs Around the Clock (MYPAC)

Visit Mississippi Youth Programs Around the Clock Website
Mississippi Youth Programs Around the Clock (MYPAC) is a home and community- based Medicaid program for children and youth with Serious Emotional Disturbance (SED), that follows the High-Fidelity Wraparound process. MYPAC provides an array of services, as an alternative to traditional Psychiatric Residential Treatment Facilities (PRTF).  Wraparound is an all-inclusive planning process that is youth-guided and family-driven.

Early Intervention

First Steps EIP

Visit First Steps EIP Website

If you have a child that is under three years old, First Steps may provide developmental services and other resources to help your child meet his or her maximum potential. Services provided include (but are not limited to): screenings, evaluations and assessments, Individualized Family Service Plans (IFSPs), Early Intervention services, and transition plans to preschool services.

View First Steps EIP Referral Form
Anyone (i.e., parents, health care providers, childcare providers) can make a referral to Early Intervention. Healthcare providers who serve infants/toddlers from birth to age three are required by state and federal regulations to make referrals within seven days of determining that an infant/toddler is possibly in need of early intervention services.

View First Steps Directory of Providers


Mississippi Conservatorship Forms

View Mississippi Conservatorship Forms

Handicap Placard

Mississippi Department of Revenue (DOR)

Visit Mississippi Department of Revenue Website
Mississippi Department of Revenue (DOR) issues handicap placards. To apply for a disabled tag and/or placard, you need to submit to your county Tax Collector a Mississippi Disabled Parking Application, Form 76-104. The application must be completed by your licensed physician or nurse practitioner. There is no additional fee required to obtain a Disabled License Plate or Placard. (All regular taxes and registration fees must be paid.) You must submit a new application when the image of the standard plate is changed, which is every 5 years. The statement must be dated within 90 days of your renewal application.

View Local Tax Collector Offices

View Disabled Parking Application

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

Legal Resources & Information

Disability Rights Mississippi (DRMS)

Visit Disability Rights Mississippi Website
Disability Rights Mississippi (DRMS) is a private, non-profit corporation that protects and advocates for the rights of individuals with disabilities across the state of MS. DRMS has been providing advocacy services for almost thirty years, free of charge, to Mississippians with disabilities. DRMS is the only disability advocacy agency in MS that has attorneys on staff to pursue legal remedies if necessary.

Additional Resources