Ohio Resources

Family Empowerment Representatives | Treatment and Research Centers | OH 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

Jennifer Martin, volunteer Family Empowerment Representative, Dublin OH  jvaughan36@yahoo.com  1-312-882-4402


Treatment and Research Centers


Clinics

Rett Syndrome Clinic at Cincinnati Children's Hospital

 1-513-636-4222

The clinic has a core team that includes a pediatric neurologist, behavioral/developmental medicine physician, nutritionist, social worker, occupational therapist and speech-language pathologist. All see the patient during the initial evaluation, then the team develops an individualized care plan. 

Clinical Trials

Please contact the trial site for current enrollment status.

 Natural History Study

Rett Syndrome Clinic at Cincinnati Children's Hospital

1-513-803-7935

The clinic has a core team that includes a pediatric neurologist, behavioral/developmental medicine physician, nutritionist, social worker, occupational therapist and speech-language pathologist. All see the patient during the initial evaluation, then the team develops an individualized care plan. Contact Caroline Spencer at  Caroline.spencer@cchmc.org 

 Cleveland Clinic

1-216-444-1994  

The Principal Investigator for this study is Dr. Sumit Parikh  parikhs@ccf.org.  For more information on the study, please contact Irys Caristo CARISTI@ccf.org or call.

 -Travel Assistance for NHS Sites

1-781-333-1593

Marriott is working on establishing discounts for hotels near our clinical trial sites.  For more information, contact Ashley Lucchese, Marriott Sales Executive Ashley.Lucchese@Marriott.com 

Nearby hotels include: Kingsgate Marriott Conference Center at the University of Cincinnati, Courtyard Cincinnati Midtown/Rookwood

 


 State Agencies - Ohio


Local Service Agencies

Ohio Department of Developmental Disabilities (DODD)

1-800-617-6733

DODD has county offices to help you find services, providers and resources. Contact your local department to get qualified for services.

Bureau for Children with Medical Handicaps Program (BCHM)

 1-800-755-4769

BCHM is part of the Ohio Dept of Health and provides assistance to children with special health care needs and their families who meet the medical and financial eligibility criteria. Must be under age 21.


Handicap Placard

Ohio BMV

 1-614-752-7800

The BMV issues Disabled Person Placards. Obtain a doctor's signature on the application for Disabled Person Placard, which is available online. Apply by mail or in person.  For Disabled plates a medical certification is required with the application.


State Medicaid 

Medicaid State Plan

1-800-324-8680 

 The Medicaid State Plan administers services that are provided to Medicaid consumers including home health nursing, home health aide and skilled therapies (PT, OT, Speech Pathology). Medical necessity must be certified by the treating physician.

Ohio Department of Job & Family Services (ODJFS)

1-614-466-2100

ODJFS offers Ohio's Medicaid program.

Ohio Home Care Waiver Program

 1-800-324-8680

This waiver is the Medicaid program of home care services and is administered by ODJFS.

Division of Disability Determination (DDD)

 1-800-282-4536 x 1438

The DDD determines medical eligibility for Ohioans in relation to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs.


Early Intervention

Ohio Help Me Grow

1-800-755-4769

Help Me Grow is an early childhood initiative, birth through age 2, that provides serices for children with developmental delay or disabilities.  Email HMG@odh.ohio.gov

Office of Early Learning and School Readiness

1-877-644-6338

This office oversees services for children in the early intervention and preschool settings.


Education

Office for Exceptional Children

1-877-644-6338

This office oversees school districts and educational programs to improve results for students with disabilities


Conservatorship

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.

Ohio Legal Services

1-800-529-6446

Ohio Legal Services provides information conservatorship and legal assistance.


Transition to Adult Services

Disability Rights Ohio

IDEA mandates transition services planning for students with disabilities who are 16 years of age. In Ohio, schools must begin transition planning when the student turns 14. The transition plan is specifically stated in the child's Individualized Education Program (IEP).  Disability Rights Ohio has excellent transition resources.

Ohio Department of Education

1-877-644-6338

For a student with a disability who is graduating or exceeding the age requirement for free appropriate public education (FAPE), a summary of the student’s academic achievement and functional performance is required and provides recommendations on how to assist students in meeting their postsecondary goals.


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. Shannon M. Standridge

1-513-636-4222

Dr. Shannon M. Standridge is co-Director of the Rett Syndrome Clinic at Cincinnati Children's Hospital.

Dr. Patricia M. Manning-Courtney 

1-513-636-5340

Dr. Patricia M. Manning-Courtney is co-Directorof the Division of Developmental and Behavioral Pediatrics at Cincinnati Children's Hospital.

Jodi Cristopfel, MSW, LISW-S

1-513-636-0071

 Jodi is a social worker in the Division of Social Services at Cincinnati Children's Hospital.

Dr. David Katz, PhD

 1-216-844-3722

Dr. David Katz, PhD is a professor in the Department of Neurosciences  at University Hospitals of Cleveland and is actively involved in research.

ClinicalTrials.gov

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


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

Triangle Therapy Service, LLC

1-937-456-6505

Triangle Therapy is located in Eaton and offers PT, OT, Speech, Hippotherapy and summer day camps.
Email: info@triangletherapyservices.com

Here's Hope Horse Farm

1-330-929-7694

Here's Hope is in Cuyahoga Falls.

Fieldstone Farm Therapeutic Riding Center, Chagrin Falls

1-440-708-0013


Legal Resources

Ohio Legal Services

1-800-529-6446

This organization provides a variety of assisted legal help. 

Disability Rights Ohio

Disability Rights has a listing of both state and national legal advocacy groups.


Recreation

Society for Accessable Travel and Hospitality (SATH)

  1-212-447-7284

SATH has tips and planning for travelers with disabilities.  Email sathinfo@sath.org

Adaptive Sports of Ohio

 1-330-262-1200

Located in Wooster, Ohio, this organization was established to promote the health and wellness of individuals with physical disabilities by providing competitive and recreational adaptive sport opportunities.

The Center for Parent Information and Resources

The center's website has a vast database of nationwide resources covering an  array of topics. Email: malizo@spannj.org


More Parent Recommendations

Achievement Centers

Achievement Centers lists summer camps and activities.

Milestones

Milestones lists summer camps and activities

Cap4Kids

 Cap4Kids lists summer camps and activities

ARC of Ohio

The ARC offers a variety of helpful services, including trainings, for families of children and adults with disabilities.

Family Handbook for Families of Children With Special Health Care Needs In Ohio

 This handbook contains a vast amount of vital information for Ohio parents.

The Center for Parent Information and Resources

This site has a large database of nationwide resources covering a variety of relevant topics.

Ohio Rettsyndrome.org Families

This Facebook group is private, ask to join.

GOBABYGO at CSU

Cleveland State was recently named the study site and a major hub for GoBabyGo, a national movement to promote mobility across the lifespan.