Michigan Resources

Family Empowerment Representatives | Treatment and Research Centers | MI 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

Lisa Rushin, volunteer Family Empowerment Representative, Alma, MI   siecam@aol.com1-989-285-5994


Treatment and Research Centers


Clinical Sites 

None at this time


 State Agencies - Michigan


Local Service Agencies

Services to Children with Developmental Disabilities

Kathy Neville 1-616-844-1056 

This department provides policy, program guidance, services innovation and technical assistance for services to children with developmental disabilities. It is delivered through the community mental health system. Customer Services functions are performed for children and families encountering systems barriers in accessing services. 

Michigan Alliance for Families

1-800-552-4821

The Alliance for Families provides information, support, and education for families who have children (birth through 26 years of age) who receive or are eligible for special education services. This website can help you with finding information on special education issues as well as disability specific information.

Bridges4Kids' Michigan Counties

Bridges4Kids.org is a non-profit parent organization providing an internet-based system of information and referral for parents and professionals working with children from birth through transition to adult life. It is good place to begin to find local assistance.

Michigan Department of Health and Human Services (MDHHS)

MDHHS determines eligibility for most of the health care programs that are administered by the State of Michigan.


Handicap Placard

Permanent Disability Parking Placard

Placards may be obtained at any Secretary of State office. The application must be signed by a physician, chiropractor, optometrist, physician's assistant or nurse practitioner. Placards are valid for four years, expiring on the applicant's birthday. Placards may be renewed up to 45 days before the expiration date or up to six months early. There is no renewal fee. A physician's statement is not required for renewals.


State Medicaid 

Children's Special Health Care Services (CSHCS)County Offices

CSHCS is a program within the Michigan Department of Community Health that provides certain approved medical service coverage to children and adults with special health care needs. Children must have a qualifying medical condition and be under 21 years of age. To apply, contact your county CSHCS office.

Children's Waiver Program (CWP)

Audrey Craft 1-517-241-5757 

The CWP makes it possible for Medicaid to fund home and community-based services for children who are under age 18. To be eligible, the child must have a documented developmental disability and need medical or behavioral supports and services at home. To apply, contact your county Access Center  or Audrey Craft, Director of Children's Home and Community-Based Waivers at crafta@michigan.gov

Community Mental Health Service Programs County Offices

This is a listing of Access Centers which serve a a starting contact for CMHS programs.

Habilitation Supports Waiver (HSW)

Central Access 1-888-800-1559 Central Access

The HSW is an intensive home and community based, active treatment and support program. It is designed to assist individuals with severe developmental disabilities to live independently with supports in their community. To apply, contact Community Mental Health Services in your county( see above) or contact Central Access.


Early Intervention

Early On Michigan

This program offers early intervention services for infants and toddlers, birth to three years of age, with developmental delays or disabilities.

MDHSS

MDHSS has Early Intervention information.


Education

Office of Special Education (OSE) 

1-517-373-0923

The OSE, within the Department of Education, is responsible for the general supervision, administration, and funding of special education programs and services for children  with disabilities ages 3-21. 


Conservatorship

Conservatorship is a legal proceeding in which an individual or agency is appointed by a court to be responsible for a person who needs assistance in activities of daily living. This process should be started approximately 6 months before the 18th birthday.

 Michigan Courts

Michigan Courts has online conservator and guardianship forms. 

MichiganLegalAid.org

LegalAid has educational information on the conservatorship and guardianship to help you determine what is appropriate to pursue.


Transition to Adult Services

Transition to Adulthood Resources

MDHSS lists resources to assist you in planning for future needs including health care, employment, education, and independent living. As youth approach adulthood the transition planning process should provide them with tools and resources to increase their ability to lead productive adult lives.

Got Transition

Got Transition This organization aims to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families.


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. Steven Leber

1-734-936-4179

 Pediatric Neurologist, University of Michigan Medical Center, Ann Arbor, MI

Dr. Steven Deroos

1-616-267-2500

Pediatric Neurologist, Helen Devos Childrens Hospital, Grand Rapids, MI

Dr Ramesh Chheda

1-810-720-7801

Pediatric Neurologist, Hurley Medical Center,Flint, MI 

Dr. Sonja Norris

1-517-622-4014

Special Needs Dentist, Grand Ledge, MI 

Dr.  Brooke Geddie

1-616-267-2605

Dr. Geddie is an Opthamologist at Devos Childrens Hospital.

Dr. Jamie Pavlak

1-616-267-2100

Dr. Pavlak is a Gastroenterologis at Devos Childrens Hospital.

Dr. Sarah VanHouten

1-616-267-2200

Dr. VanHouten is a Pulmonologist at Devos Childrens Hospital.

Dr. Chad Afmnan

1-616-267-7758

Dr. Afmnan specializes in ENT at Devos Childrens Hospital.

Dr. Robert Conway

1-517-364-5440

Dr. Conway specializes in genetics and has offices in Lansing and Detroit Lansing. 

ClinicalTrials.gov

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


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

Children's Therapy Corner

1-989-835-6333 Midland  1-517-706-0421 Lansing 1-231-929-2354 Traverse City

Children's Therapy Corner offers PT, OT and SLI services.  Music and Aquatic Therapy available in some locations.  Located in Midland, Lansing and Traverse City.

MSU Community Music School

1-517-355-7661

MSU Community Music School in E. Lansing offers private and group music therapy. 


Legal Resources


Recreation


More Parent Recommendations

Michigan Rett Families Facebook

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