Kentucky Resources

Family Empowerment Representatives | Treatment and Research Centers | KY 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.

Samantha Brant - Family & Community Engagement Manager,

Treatment and Research Centers

Clinics & Clinical Trials

Signifies site involved with the Natural History Study

The objective of this study is to gather as much data as possible about children and adults with Rett syndrome. This includes information about nutrition, development, and height & weight measurements. This data will stimulate more clinical research and better prepare us for future clinical trials. 

 State Agencies - Kentucky

Local Service Agencies

Kentucky Cabinet for Health and Family Services


The Division of Developmental and Intellectual Disabilities (DDID) partners with and supports persons with intellectual or developmental disabilities. DDID comprises two branches—the Supports for Community Living Waiver Branch and the Community Support Branch. 

Supports for Community Living (SCL) Waiver Branch


Supports for Community Living (SCL) Waiver Branch  The SCL Waiver Branch of the DDID provides staff support for and oversight of the SCL waiver program. 1-502-564-7700

Community Supports Branch


The Community Support Branch  oversees the 14 Regional Community Mental Health/Intellectual Disability Centers (CMHCs). DDID Regional Liaisons work with CMHCs to assist persons with disabilities and their families in locating resources and supports. CMHCs provide services such as case management, community access, supported employment and respite.

Regional DDID Liaisons

This site has a comprehensive listing of disability resources for the state of Kentucky.

The Dream Factory - Louisville

The Dream Factory is the largest children’s wish-granting organization that does not limit its mission to children who have life-threatening illness. The organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain. 

The Dream Factory - Lexington

The Dream Factory - Bowling Green

Handicap Placard

Kentucky KTC


You must apply for a placard or license plate, which requires medical certification. If your placard or plate is lost, stolen, or damaged, you can get a replacement from your county clerk’s office. 

KTC Disabled Placard/Plates Application

County Clerk's Offices

State Medicaid 

Apply for Medicaid

1-855-459-6328 Call Center

Individuals or families may apply for Medicaid in the following ways: Self Service Portal, mail or fax, in person, or Call Center.

Medicaid Mail Address

1-502-573-2005 Fax

Mail applications to: Office of the Kentucky Health Benefit Exchange; 12 Mill Creek Park; Frankfort, KY 40601 or Fax.

Medicaid Self Service Portal

Local DCBS Office

Your local DCBS Office can help you apply for Medicaid.

SCL Waiver

The SCL waiver program was developed as an alternative to institutionalization to allow a person to remain in  the community. Persons with developmental disabilities who meet the requirements for residence in an Intermediate Care Facility and who meet other Medicaid requirements are eligible. Apply directly to the DDID by faxing or mailing the application or electronically through a case manager using MWMA.

Electronic MWMA application

DIDD Application for SCL Waiver

The MWMA information page  is a one-stop resource for the latest information related to the MWMA project and its implementation.

Home and Community Based (HCB) Waiver

 The HCB Waiver program provides services and support to children and adults with disabilities to help them to remain in or return to their homes. Apply with your Local DCBS office.

Michelle P. Waiver

The Michelle P. Waiver provides an alternative to institutional care for people with intellectual or developmental disabilities. The waiver allows individuals to remain in their homes with services and supports.

Consumer Directed Option (CDO)

CDO allows waiver eligible members to choose a provider for their non-medical waiver services, allowing them greater choice and control over their supports and services. Members can choose to direct all or some of their non-medical waiver services.

Early Intervention

First Steps


First Steps is a statewide early intervention system that provides services to children with developmental disabilities from birth to age 3. First Steps offers comprehensive services through a variety of community agencies and service disciplines and is administered by the Department for Public Health in the Cabinet for Health and Family Services. Anyone can refer a child for First Steps services by phone.

Local Point of Entry for First Steps

There are 15 POEs and they receive all referrals to the First Steps program, facilitate eligibility determination and coordinate the development of the initial Individualized Family Service Plan.


Division of Learning Services


The DLS  site includes information on all aspects of special education programs in public schools. 

School Based Medicaid Services

Kentucky school districts may participate in two Medicaid School-Based Programs; School-Based Health Services and School-Based Administrative Claiming.


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.

Kentucky Guardianship


Kentucky’s public guardianship program is administered by the Division of Guardianship in the Cabinet for Health and Family Services. In Kentucky, guardianship is a legal relationship between a court-appointed adult who assumes the role of guardian for a ward. A ward is a person who has been declared legally disabled by the court and is no longer able to care for his or her personal and/or financial needs. 

Transition to Adult Services

Office of Vocational Rehabilitation (OVR)

For students with disabilities the success of the transition from school to adult life depends on teamwork and collaboration between the schools and community resources. OVR works closely with the Kentucky Department of Education to assist eligible students with disabilities to identify, plan for, and achieve their vocational goals. Typically a referral is made when the student is within two years of exiting high school. A student can be referred earlier if appropriate.

Local OVR offices

Parent Recommendations

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

 Medical Professionals

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

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

Legal Resources


More Parent Recommendations

Kentucky IRSF Rett Syndrome Families Facebook page

Click and ask to join.

The  Molly Johnson Foundation

The Molly Johnson Foundation was founded by Robin and Jojo Johnson in honor of their daughter Molly who passed away November 2nd 2007. Molly was born with a rare genetic disorder named Wiedeman – Rautenstrauch Syndrome, a neurological condition diagnosed in less than 100 children worldwide. Through their own experiences of raising 2 special needs children, the Johnson family understands the many obstacles and challenges that families of special needs children are faced with. The Molly Johnson Foundation was created to assist families of special needs children in a variety of ways. These families often have needs from financial needs to lack of medical equipment and many other challenges to overcome. The Molly Johnson Foundation desires to make a difference in these families lives the best way possible.