Minnesota

Minnesota

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
(312) 413-1407 (V/TTY)
(800) 949-4232 (V/TTY)
http://www.adagreatlakes.org


Assistive Technology
STAR Program
358 Centennial Office Building
658 Cedar Street
St. Paul, MN, 55155<
(651) 201-2640
(888) 234-1267
(800) 627-2527 (TTY)
TTY: MN Relay at 711
http://www.mn.gov/admin/star/


CHIP
(health care for low-income uninsured children)
MinnesotaCare
P.O. Box 64838
St. Paul, MN, 55164-0838
(651) 431-2801
(800) 657-3672
(800) 627-3529 (TTY)
http://www.benefits.gov/benefits/benefit-details/607


D D Council
Minnesota Governor’s Council on Developmental Disabilities
370 Centennial Office Building
658 Cedar Street
St. Paul, MN, 55155
(651) 296-4018
(877) 348-0505
(800) 627-3529 (MN Relay service)
http://www.mncdd.org


Developmental Disabilities
Disabilities Service Division
Department of Human Services
540 Cedar Street
P.O. Box 64967
St. Paul, MN, 55164-0967
(651) 431-4300
http://www.dhs.state.mn.us


Early Intervention
Minnesota Department of Education
Division of Early Learning Services
1500 Highway 36 West
Roseville, MI, 55113-4266
(651) 582-8689
http://education.state.mn.us/MDE/index.html


MN Help Me Grow: Infant and Toddler Intervention
Minnesota Department of Education
(866) 693-4769
MDE.ECSE@state.mn.us
http://www.parentsknow.state.mn.us/parentsknow/index.html


Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:
(713) 520-0232 (V)
(713) 520-5136 (TTY)
http://www.ilru.org/projects/silc-net/silc-directory-results/MN


Metropolitan Center for Independent Living
530 Robert Street North
Saint Paul, MN, 55101
(651) 646-2006
http://www.mcil-mn.org


Intellectual & Developmental Disabilities
The Arc of Minnesota
800 Transfer Road, Suite 7A
St. Paul, MN, 55114
http://www.TheArcofMinnesota.org


Learning Disabilities
Learning Disabilities Association of Minnesota
6100 Golden Valley Road
Golden Valley, Minnesota 55422
(952) 922-8374
http://www.ldaminnesota.org


Mental Health
Mental Health Association of Minnesota
475 Cleveland Avenue N – suite 222
Saint Paul, MN, 55104
(800) 862-1799
http://www.mentalhealthmn.org


NAMI-Minnesota (National Alliance on Mental Illness)
800 Transfer Road, Suite 31
St. Paul, MN, 55114
(651) 645-2948
(888) NAMI-HELPS
http://www.namihelps.org


Minnesota Association for Children’s Mental Health
165 Western Avenue, Suite 2
St. Paul, MN, 55102
(651) 644-7333
(800) 528-4511
info@macmh.org
http://www.macmh.org


Department of Human Services
P.O. Box 64981
St. Paul, MN, 55164-0988
(651) 431-2225
http://mn.gov/dhs/


Children’s Mental Health Division
P.O. Box 64985
St. Paul, MN, 55164-0985
(651) 431-2321
http://mn.gov/dhs/


Parent Organizations
Parent Teacher Association (PTA)
Minnesota Congress of Parents, Teachers and Students
1667 Snelling Avenue North, suite 111
St. Paul, MN, 55108
(651) 999-7320
(800) 672-0993
http://www.mnpta.org


Parent Training and Information Center (PTI)
PACER Center, Inc.
8161 Normandale Boulevard
Minneapolis, MN, 55437-1044
(952) 838-9000
(952) 838-0190 (TTY)
(888) 248-0822(in MN)
http://www.pacer.org


P2P at Family Voices of Minnesota
(866) 334-8444
http://familyvoicesofminnesota.org


Partners in Policymaking
Government Training Services
2233 University Avenue West, Suite 150
St. Paul, MN, 55114
(651) 222-7409, ext. 205
http://www.mngts.org


Preschool, Disabilities
Minnesota Help Me Grow
Minnesota Department of Education
(866) 693-4769
MDE.ECSE@state.mn.us
http://helpmegrowmn.org/HMG/HelpfulRes/Articles/DoesMyChildNeedPreschoolSpecEd/index.html


Minnesota Department of Education
Early Childhood Special Education 
1500 Highway 36 W
Roseville, MN 55113
(651) 582-8200
http://education.state.mn.us/MDE/fam/ecse/Protection & Advocacy


Minnesota Disability Law Center
430 First Avenue, North, Suite 300
Minneapolis, MN, 55401-1780
(612) 332-1441
(800) 292-4150
http://www.mndlc.org


Relay Services
(800) 627-3529 (V/TTY/ASCII); 711 (V/TTY/ASCII)
(877) 627-3848 (Speech to Speech)
(877) 627-5448 (Spanish)
(900) 246-3323 (900 access)


Special Education
Minnesota Department of Education
Special Education Programs
1500 Highway 36 West
Roseville, MN, 55113-4266
(651) 582-8616
mde.special-ed@state.mn.us
http://education.state.mn.us/MDE/fam/sped/index.htm


Special Format Library
Minnesota Braille and Talking Book Library
400 SE 6th Ave
Faribault, MN, 55021-6340
(800) 722-0550
mn.btbl@state.mn.us
http://education.state.mn.us/MDE/fam/mbtbl/index.htm


Special Health Care Needs
Family Voices of Minnesota
P.O. Box 2234
Stillwater, MN, 55082
http://www.familyvoicesofminnesota.org


Speech, Language, and Hearing
Minnesota Speech-Language-Hearing Association
1000 Westgate Drive, Suite 252
St. Paul, MN, 55114
(651) 290-6292
http://www.msha.net


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.state.mn.us


UCEDD
Institute on Community Integration
University of Minnesota
College of Education and Human Development
102 Pattee Hall
150 Pillsbury Drive SE
Minneapolis, MN, 55455
(612) 624-6300
http://ici.umn.edu/


Vocational Rehabilitation
Rehabilitation Services Branch
Department of Employment and Economic Development
First National Bank Building
332 Minnesota Street, #E200
St. Paul, MN, 55101
(651) 296-7510
(800) 328-9095
http://mn.gov/deed/job-seekers/disabilities/


Goodwill/Easter Seals
553 Fairview Avenue North
St. Paul, MN, 55104
(651) 379-5800 (V/TTY)
(800) 669-6719
http://www.goodwilleasterseals.org


Minnesota State Council on Disability
121 E. 7th Place, Suite 107
St. Paul, MN, 55101
(651) 361-7800 (V/TTY)
(800) 945-8913 (V/TTY)
http://www.disability.state.mn.us


VSA arts of Minnesota
The Cowels Center
528 Hennepin Avenue, Suite 305
Minneapolis, MN, 55403
(612) 332-3888
(800) 801-3883
http://www.vsamn.org



FAQS RESOURCES REGISTER DONATE
Newborn Genetic Screenings

The Power of Newborn Genetic Screenings: How Newborn Genetic Screenings Can Change the Diagnosis

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

Why I Should Have Gotten the Autism Diagnosis for My Child Early On (or Why I Did Not)

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.
Share by: