Wisconsin Resources

Family Empowerment Representatives  | Treatment and Research Centers | WI 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

Patty Mevis,  volunteer Family Empowerment Representative,  Green Bay  mmevis@sbcglobal.net1-920-819-2508


Treatment and Research Centers

Clinics & Clinical Trials  - none at this time


 State Agencies - Wisconsin


Local Service Agencies

Family Support Program

The Family Support Program provides individual services and supports to families that include a child with severe disabilities.

Aging and Disability Resource Centers (ADRC)

 1-608-266-1865

ADRC offers information and assistance on services matching your family's needs. Contact your local county ADRC office for more information. Disability Benefit Specialists within ADRC can answer questions regarding Social Security, Medicare, health insurance, and other public and private benefits for people with disabilities. 

County ADRC Offices


Handicap Placard

State of Wisconsin Department of Transportation

The DOT issues handicap placards. Complete the application and have it signed by a medical professional (acceptible professions listed in the Eligibility section on the application). Mail or submit application in person to your local WISDOT office. Applications submitted in person are subject to a fee. Handicap placards must be renewed every 4 years.


State Medicaid 

The Katie Beckett Program

The Katie Beckett Program is a special eligibility process that allows certain children with long-term disabilities, mental illness, or complex medical needs, living at home with their families, to obtain a Wisconsin Forward Health Medicaid card. Children who are not eligible for other Medicaid programs due to income restrictions  may be eligible through the Katie Beckett Program even if they are currently covered under a private health insurance policy. For more information, contact the Katie Beckett Program Consultant in your county.

Katie Beckett Program Consultants

Wisconsin's Children's Long-Term Support Waivers (CLTS)

CLTS Waivers make Medicaid funding available to children who are living at home or in the community and who have substantial limitations due to developmental, emotional, or physical disabilities. Funding may be used to support a range of services that are identified based on an assessment of your child's needs and goals. Wisconsin has three CLTS Waivers, one for each category of disability: developmental disabilities, severe emotional disabilities, and physical disabilities. Some children will qualify for more than one Waiver. To apply, contact your county Social Service or Human Service Agency.

County Social Service and Human Service Agencies


Early Intervention

Birth to 3 Program

The Birth to 3 Program is a federally-mandated Early Intervention program to support families of children with developmental delays or disabilities under the age of three. To apply, contact your county Primary Point of Referral.


Education

Wisconsin Department of Public Instruction

Wisconsin Department of Public Instruction's Special Education Team oversees special education services. 1-608-266-1781

Wisconsin Statewide Parent-Educator Initiative (WSPEI)

WSPEI is a service for families, educators, and others interested in parent-educator partnerships for children with disabilities.  They support increased sharing of information among parents, schools, projects, organizations and agencies through networking meetings, conferences, person-to-person contact, and media. 

Cooperative Educational Service Agency (CESA)

This site lists local contact information for special education services.


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 activities of daily living. Check with your child's high school for information on low/no cost Self Help Clinics. This process should start approximately 6 months before the 18th birthday. 

Wisconsin Courts

Wisconsin Courts have online forms and tools for conservatorship.


Transition to Adult Services

County Aging & Disability Resource Center (ADRC)

Young people with disabilities, who receive services and supports as children, will also need to consider how to find services and supports as adults. If you are a teen or young adult receiving services as a child, or if you are the parent of a young adult, it is important to start planning for the transition to adulthood as early as possible.  ADRC can help.

Department of Vocational Rehabilitation(DVR)

1-262-548-58800 Deanna Krell   1-608-261-0060 Sarah Lincoln 

The DVR partners with the Department of Public Instruction (DPI) and the Department of Health Services (DHS) to provide a smooth transition from school to the world of work and community services. Contact Deanna Krell,  Deanna.Krell@dwd.wisconsin.gov  or  Sarah Lincoln,  SarahJ.Lincoln@dwd.wisconsin.gov  


Parent Recommendations

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org


 Medical Professionals

Marshfield Clinic Chippewa Falls Dental Center

1-715-738-2000 


Dentists and hygienists at the Marshfield Clinic take people with Medicaid and people without any insurance. They specialize in caring for people with disabilities who need extra help to get through a checkup and cleaning.

Dr. Deb McLeish

1-608-263-6540

Dr. McLeish is a Physiatrist at UWHC Madison and St. Mary's Hospital.  She is board certified in Pediatrics,  Physical Medicine and Rehabilitation, and Pediatric Rehabilitation.  

Dr. Ken Noonan

1-800-323-8942 

Dr. Noonan is an Orthopedic Surgeon at UWHC Madison and also sees patients at St. Mary's Hospital Gait Clinic.

Dr. Elizabeth Moberg

1-262-527-1998

Dr. Moberg practices Pediatric Rehab Medicine at Children's Hospital of Wisconsin, Milwaukee. 

Dr. Amy Grelle

   1-608-798-3344

Dr Grelle is a Family Medicine Physician in Cross Plains, WI.

Dr. Christina Iyama

1-608-263-3301   

Dr. Iyama specializes in Developmental Pediatrics at the Waisman Center in Madison. 

ClinicalTrials.gov

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


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

Communication Aids & Systems Clinic (CASC)

The CASC team's speech-language  pathologists and occupational therapists provide highly specialized augmentative and alternative communication (AAC) for children and adults with significant communication difficulties.

Three Gaits Therapeutic Horsemanship Center, Stoughton, WI 

1-608-877-9086


Legal Resources

WisPACT, Inc

WisPACT is a private nonprofit orginazation that administers pooled and community Special Needs Trusts for more than 2000 people with disabilities in Wisconsin.  They are based in Madison.   1-608-268-6006

Attorney Roy Froemming

Froemming Law offers resources for Special Needs Trusts and information on SSI for people with disabilities.  1-608-663-2747  


Recreation

Mount Olympus Theme Park

Wisconsin State Parks, Forests and Recreation Areas

This site has a map of accessible options.

Discover Wisconsin

Discover Wisconsin is a website dedicated to accessibility activities in Wisconsin

Easter Seals Respite Camp

Easter Seals Respite Camp at Camp Wawbeek in Wisconsin Dells  1-608-237-1979

Wisconsin Badger Camp, Platteville, WI

 1-608-348-9689 


More Parent Recommendations

Wisconsin Rettsyndrome.org Families Facebook

Katy's Kloset

 Katy's Kloset is a nonprofit lending library that accepts donations of gently used durable medical equipment.  1-262-746-9034

Dane County Resources

Living Our Visions, Inc. (LOV-Dane) 

LOV-Dane is a grassroots organization of individuals with disabilities, their families, friends and community members building fulfilling and community-centered lives for all citizens.

Hancock Center for Dance/Movement Therapy

1-608-251-0908

Easter Seals Respite Camp

Wisconsin Family Ties This is a network of family advocates who provide support groups, peer-mentoring, training and advocacy for families.  1-800-422-714