Wisconsin

Wisconsin

ADA Center
Great Lakes ADA Center

University of Illinois at Chicago
Institute on Disability & Human Development (MC 728)
1640 West Roosevelt Road, Room 405
Chicago, IL, 60608

http://www.adagreatlakes.org


Assistive Technology
Wistech
Office of Independence and Employment

1 W. Wilson, Room 951
P.O. Box 7851
Madison, WI, 53707-7851

http://dhs.wisconsin.gov/disabilities/wistech/index.htm


CHIP (health care for low-income uninsured children)
Wisconsin BadgerCare
P.O. Box 6678
Madison, WI, 53716

http://dhs.wisconsin.gov/BadgerCarePlus/


D D Council
Board for People with Developmental Disabilities

201 W. Washington Avenue, Suite 110
Madison, WI, 53703

http://www.wi-bpdd.org/


Developmental Disabilities
Developmental Disabilities Services Section
Division of Long Term Care

Department of Health Services
1 W. Wilson Street, Room 418
Madison, WI, 53707-7851

https://www.dhs.wisconsin.gov/long-term-care-support.htm


Early Intervention
Division of Long Term Care

Department of Health Services
P.O. Box 7851
Madison, WI, 53707-7851

https://www.dhs.wisconsin.gov/birthto3/index.htm


Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:

Independent Living Research Utilization Project

The Institute for Rehabilitation and Research

http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/WI


To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living

2013 H St. NW
Washington, DC, 20036

http://www.ncil.org


Intellectual & Developmental Disabilities
The Arc Wisconsin 

PO Box 201
Stoughton, WI 53589
info@arcwi.org

https://arcwi.org/


Learning Disabilities
Learning Disabilities Association of Wisconsin

P.O. Box 14690
Madison, WI, 53708-0690

http://www.LDAWisconsin.com


Mediation
Wisconsin Special Education Mediation System
Burns Mediation Services

P.O. Box 107
Hartland, WI, 53029-0107

http://www.wsems.us


Mental Health
Mental Health America of Wisconsin

600 W. Virginia St, Suite 502
Milwaukee, WI 53204

http://www.mhawisconsin.org


Parent Organizations
Community Parent Resource Center

Alianza Latina Aplicando Soluciones
1615 S. 22nd St., Ste 109
Milwaukee, WI, 53204

http://alianzalatinawi.org


Wisconsin Statewide Parent-Educator Initiative
25 S. Webster Street, Madison, WI 53703
P.O. Box 7841
Madison, WI 53707

http://dpi.wi.gov/sped/families


Wisconsin Parent Teacher Association (PTA)
4797 Hayes Road, Suite 102
Madison, WI, 53704-3256

http://www.wisconsinpta.org/


Parent Training and Information Center (PTI)
Wisconsin FACETS

600 W. Virginia Street, Suite 501
Milwaukee, WI, 53204

http://www.wifacets.org


Parent to Parent of Wisconsin
1020 Kabel Avenue
Rhinelander, WI, 54501

http://www.p2pwi.org


Preschool, Disabilities
Early Childhood Special Education

P.O. Box 7841
Madison, WI, 53707-7841

http://dpi.wi.gov/sped/early-childhood


Protection & Advocacy
Disability Rights Wisconsin

131 W. Wilson St., Suite 700
Madison, WI, 53703

http://www.disabilityrightswi.org/


Relay Services
(800) 947-6644 (V)
(800) 947-3529 (TTY); 711 (TTY)
(800) 272-1773 (ASCII); (800) 267-8867 (Fast ASCII)
(800) 833-7637 (Speech to Speech)


Special Education
Department of Public Instruction

125 S. Webster Street
P.O. Box 7841
Madison, WI, 53707-7841

http://dpi.wi.gov/sped/topics


Special Health Care Needs
Family Voices of Wisconsin
Family-to-Family Health Information Network

P.O. Box 55029
Madison, WI, 53705

http://www.familyvoicesofwisconsin.com/


Department of Health Services
Children’s Special Health Care Needs Program

1 W. Wilson Street
P.O. Box 2659
Madison, WI, 53703

https://www.dhs.wisconsin.gov/cyshcn/index.htm


Special Format Library
Wisconsin Talking Book and Braille Library (WTBBL)

813 W. Wells Street
Milwaukee, WI, 53233-1436

http://dpi.wi.gov/talkingbooks


Speech, Language, and Hearing
Wisconsin Speech-Language-Pathology and Audiology Professional Association

563 Carter Court, Suite B
Kimberly, WI 54316

http://www.wisha.org


State Web Site
Connect with your state’s official website to find all manner of state agencies and information, including how to contact your governor and/or your representatives in the Senate and House:

http://www.wisconsin.gov


Transition Services
Wisconsin Statewide Transition Initiative

http://www.witig.org/


UCEDD
Waisman Center
University of Wisconsin – Madison
1500 Highland Avenue
Madison, WI, 53705-2280

http://ucedd.waisman.wisc.edu


Vocational Education, Disabilities
Career and Technical Education
Department of Public Instruction

P.O. Box 7841
Madison, WI, 53707-7841

http://dpi.wi.gov/cte?old=cte.dpi.wi.gov/


Vocational Rehabilitation
Division of Vocational Rehabilitation
Department of Workforce Development

201 East Washington Avenue
PO Box 7946
Madison, WI, 53707

http://dwd.wisconsin.gov/dvr/


Easter Seals Wisconsin
101 Nob Hill Road, Suite 301
Madison, WI, 53713

https://www.eastersealswisconsin.com/


Wisconsin First Step
The Parenting Place

Various Locations
(608) 784-8125
(800) 873-1768

http://www.theparentingplace.net


NAMI Wisconsin
4223 W. Beltline Highway
Madison, WI, 53711

http://www.namiwisconsin.org


Wisconsin Family Ties
1-800-422-7145

http://www.facebook.com/wisconsinfamilyties

http://www.wifamilyties.org/


VSA arts of Wisconsin, Inc.
1709 Aberg Avenue, Suite 1
Madison, WI 53704

http://www.vsawis.org


Governor’s Committee for People with Disabilities
1 W. Wilson Street, Room 551
Madison, WI, 53703
(608) 266-9354

https://gcpd.wisconsin.gov


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Newborn Genetic Screenings
By Penelope Gatlin 05 Oct, 2023
By Penelope Gatlin October 2023 When our son was born in 2012, he was hypotonic, severely jaundiced, had feeding difficulties and features such as epicanthic folds and small low set ears. We were told immediately that doctors had suspicions of a genetic syndrome. At that time, genetic testing was limited and once abnormal karyotype, Trisomy 21, and Fragile X were ruled out, we left the hospital with an 8 day old and no diagnosis. While no testing was available at that time to identify the ultra-rare syndrome my child had, because it wouldn’t even be identified until 4 years later, I can only imagine the difference it would have made to our journey to have such an answer sooner. Instead, we were unprepared and actually unaware that just because a diagnosis hadn’t been made then that it didn’t mean there wasn’t in fact a rare disease present. Instead, we dealt with issues as they came and worried and wondered what would be next. From feeding issues and reflux and constipation, to low muscle tone and delayed walking, to speech delay, social and emotional delays, toileting delays, diagnoses of developmental delay, anxiety, situational mutism, sensory processing disorder, and autism, until finally genetic testing that revealed the diagnosis that we’d waited 7 years to find out. While receiving a diagnosis can seem scary, not having an answer but knowing there must be one is even more so. In 2019, the day I clicked onto the portal to see the test results, the largest word on the page was POSITIVE. My heart stopped for a second. For the first time, I read the words “Okur-Chung Neurodevelopmental Disorder.” A roller coaster of emotions ensued, including sadness that we hadn’t known this from birth because it would have made us as parents more prepared, and given us more understanding about what might arise next. Relief that we had an answer, grateful that this syndrome had been identified and that he was among one of the first hundred diagnosed with it in the world, and glad we had the privilege to have access to the testing. Excitement that we can participate in future research. Fright that there’s so much we don’t know about OCNDS, and happiness that there is something that we do. A feeling that we are no longer shooting in the dark and have a small but supportive community to rely on and learn from. I am hopeful that one day, all newborns with features like my child will be tested at birth, so parents can have access to the answers, support, and interventions and therapies that can best help their child as soon as possible.
Autism Diagnosis
By Terri Jordan 23 Aug, 2023
For 16 years, my child displayed numerous symptoms that left us searching for answers, but a genetic diagnosis remained elusive. I considered having my child evaluated for autism to shed light on their situation. However, when I reached out to teachers, doctors, and therapists, I received frustrating responses: “Your child is too friendly to be autistic.” This statement made me doubt the possibility of autism because my child was sociable. “Your child can transition from one activity to another – they are not autistic.” Hearing this, I questioned whether my child’s ability to shift activities invalidated the need for an autism evaluation. “Your child can look me in the eye and answer questions – they are not autistic.” Observations like this made me second-guess the idea of autism, even though my child faced various challenges. “Getting a diagnosis that does not apply to your child would be a big waste of money.” Despite my persistent concerns, this cautionary advice about the evaluation costs left me hesitant. We finally pursued an evaluation when my son turned 20, and it confirmed that he is indeed on the autism spectrum (severe side). Looking back, I regret not taking this step sooner. I should have pursued the autism diagnosis before we received the genetic diagnosis. There are several benefits we could have gained as a family if we had pursued an early diagnosis: “Early Support Is Crucial:” I now realize that early intervention could profoundly impact my child’s development. We could have accessed the right services and therapies much earlier with a diagnosis. “Understanding My Child Better:” I struggled to comprehend my child’s behaviors and communication difficulties. An earlier diagnosis could have provided insights into their unique needs and thought processes. The education could also help me explain how to react to my child’s behavior to family members. “Tailored Guidance and Resources:” A diagnosis could have opened doors to specialized resources and guidance, enabling me to provide the best possible support for my child. “Connecting with Others:” Being part of the autism community might have connected us with other parents who understand our experiences. Sharing and learning from each other could have been invaluable. “Planning for the Future:” Knowing more about my child’s strengths and challenges could have helped me better plan their future, including education, career, and overall well-being. Depending on your location, many states offer funding and support if your child has an autism diagnosis. I wish I listened to my voice instead of being swayed by experts who didn’t fully understand my child’s situation. Ultimately, I know this decision is significant, requiring careful consideration by parents. Looking back, I wish I had trusted my instincts and sought an evaluation sooner to improve my child’s life.
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