Michigan

Michigan

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
Assistive Technology of Michigan
43000 W. Nine Mile Rd., Suite 113
Novi, MI 48375
(248) 348-7161
info@atofmich.com
http://www.myisminctest.com/


Michigan Disability Rights Coalition
3498 East Lake Lansing Rd, Ste 100
East Lansing, MI 48823
(517) 333-2477
(800) 760-4600
http://www.copower.org/assistive-tech


Michigan Alliance for Families
1325 S. Washington Ave.
Lansing, MI 48910
(800) 552-4821
info@michiganallianceforfamilies.org
http://www.michiganallianceforfamilies.org/


CHIP
(health care for low-income uninsured children)
MIChild
P.O. Box 30412
Lansing, MI, 48909
(888) 988-6300
(888) 263-5897 (TTY)
www.michigan.gov/mdch/1,1607,7-132-2943_4845_4931—,00.html


D D Council
Michigan Developmental Disabilities Council
201 Townsend St, Ste 120
Lansing, MI 48913
(517) 335-3158
mdch-dd-council@michigan.gov
http://www.michigan.gov/ddcouncil


Early Intervention
Michigan Department of Education
Office of Early Childhood Education and Family Services
13109 Schacey Road, Ste 4
DeWitt, MI 48820
(800) 327-5966
eoreferral@edzone.net
http://www.1800earlyon.org


Epilepsy
Epilepsy Foundation of Michigan
25200 Telegraph Rd, Ste 110
Southfield, MI 48033
(248) 351-7979
(800) 377-6226
letters@epilepsymichigan.org
http://www.epilepsymichigan.org


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
2323 South Sheppard, Suite 1000
Houston, TX, 77019
(713) 520-0232 (V)
(713) 520-5136 (TTY)
ilru@ilru.org
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory


To find out the contact information for centers for
independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0334 (V)
(202) 207-0340 (TTY)
ncil@ncil.org
http://www.ncil.org


Intellectual & Developmental Disabilities
The Arc Michigan
1325 S. Washington Avenue
Lansing , MI, 48910
(517) 487-5426
(800) 292-7851
http://www.arcmi.org


Learning Disabilities Association of Michigan
200 Museum Drive, Suite 101
Lansing, MI, 48933-1914
(517) 485-8160
(888) 597-7809
ldamich@sbcglobal.net
http://www.ldaofmichigan.org


Michigan Special Education Mediation Program
516 S. Creyts Rd, Suite A
Lansing, MI 48917
(517) 334-0034
(800) 873-7658
info@msemp.org
https://msemp.cenmi.org/


Department of Community Health
Capitol View Building, 7th Floor
201 Townsend Street
Lansing, MI, 48913
(517) 373-3500
http://www.michigan.gov/mdch


Association for Children’s Mental Health
6017 W. St. Joseph Highway, Ste 200
Lansing, MI 48917
(517) 372-4016
(888) 226-4543 (Parent line)
http://www.acmh-mi.org


Mental Health Association in Michigan
30233 Southfield Road, Suite 220
Southfield, MI, 48076
(248) 647-1711
mark@mha-mi.org
http://www.mha-mi.com


Division of Mental Health Services to Children and Families
Department of Community Health
Lewis Cass Building
320 S. Walnut Street
Lansing, MI, 48913
(517) 241-5762
Falvay@michigan.gov
http://www.michigan.gov/mdch


Michigan Alliance for Families
Lansing Main Office
1325 S. Washington Avenue
Lansing, MI, 48910
(517) 492-5021
(800) 552-4821
info@michiganallianceforfamilies.org
http://www.michiganallianceforfamilies.org/


Parent Teacher Association (PTA)
Michigan Congress of Parents, Teachers and Students
1390 Eisenhower Place
Ann Arbor, MI 48108
(734) 975-9500
director@michiganpta.org
http://www.michiganpta.org


Parent Training and Information Center (PTI)
Michigan Alliance for Families – Region 1
3111 Grand River Avenue
Detroit, MI, 48208
(800) 552-4821
(313) 833-3883
caryn.ivey@michiganallianceforfamilies.org
http://www.michiganallianceforfamilies.org


Parent Training and Information Center (PTI)
Michigan Alliance for Families – Region 2
1286 Pipestone, Suite A
Benton Harbor, MI, 49022
(800) 552-4821
(269) 934-9471
michelle@michiganallianceforfamilies.org
http://www.michiganallianceforfamilies.org


Training and Technical Assistance for Family Involvement
Michigan Alliance for Family
Parent Mentoring, Training and Leadership Opportunities
1325 S. Washington Avenue
Lansing , MI, 48910
(517) 487-5426
(800) 292-7851
sandee.k@arcmi.org
http://www.arcmi.org


Protection & Advocacy
Michigan Protection and Advocacy Service, Inc.
4095 Legacy Parkway, Suite 500
Lansing , MI, 48911-4263
(517) 487-1755 (V/TTY)
(800) 288-5923 (V/TTY)
http://www.mpas.org


Relay Services
(800) 649-3777 (V/TTY)
711 (TTY)
(866) 656-9826 (Speech to Speech

Office of Special Education and Early Intervention Services
Michigan Department of Education
608 W. Allegan St. PO Box 30008
Lansing, MI 48933
(517) 373-0923
mde-ose@michigan.gov
http://www.michigan.gov/mde


Office of Special Education and Early Intervention Services
Michigan Department of Education
P.O. Box 30008
Lansing , MI, 48909
(517) 373-0923
easterlingd@mi.gov


Special Format Library
Library of Michigan
Service for the Blind and Physically Handicapped
P.O. Box 30007
Lansing , MI, 48909
(517) 373-5614
btbl@michigan.gov
www.michigan.gov/btbl


Children’s Special Health Care Services Division
Michigan Department of Community Health
320 S. Walnut
Lansing , MI, 48913
(517) 241-7186
(800) 359-3722
stifflerk@michigan.gov
http://www.michigan.gov/cshcs


Speech, Language, and Hearing
Michigan Speech-Language-Hearing Association
790 W. Lake Lansing Road, Suite 500A
East Lansing, MI, 48823
(517) 332-5691
http://www.michiganspeechhearing.org


Community Parent Resource Center
SPEAKS Education
125 Arlington Plaza, Ste 10
Sault Saint Marie, MI 49783
(906) 635-8984
(855) SPE-AKSE
http://www.speakseducation.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.michigan.gov/


Transition Services
High School Redesign for Secondary Transition Services
Office of Special Education and Early Intervention Services
Michigan Department of Education
P.O. Box 30008
Lansing , MI, 48909-7508
(517) 373-0923
KoroldenM@mi.gov
http://www.michigan.gov/mde


Wayne State University
Developmental Disabilities Institute
4809 Woodward Avenue
268 Leonard N. Simons Building
Detroit, MI, 48202
(313) 577-2654
(888) 978-4334
DDI@wayne.edu
http://ddi.wayne.edu


Vocational Rehabilitation
Michigan Rehabilitation Services
Michigan Department of Labor & Economic Growth
P.O. Box 30010
Lansing , MI, 48909
(517) 373-0399
(800) 605-6722
http://www.michigan.gov/mrs


Office of Career and Technical Preparation
Michigan Department of Education
201 N. Washington Square
Lansing , MI, 48913
(517) 335-5858
http://www.michigan.gov/mdcd


Easter Seals Michigan
2399 E. Walton Blvd
Auburn Hills, MI 48326
(248) 457-6400
(800) 757-3257 (in MI)
http://www.essmichigan.org


Michigan Department of Labor & Economic Growth
Michigan Commission on Disability Concerns and Division on Deaf and Hard of Hearing
201 N. Washington Square, Suite 150
Lansing , MI, 48913
(517) 335-6004 (V/TTY);
(877) 499-6232
dodhh@michigan.gov
http://www.mcdc-dodhh.org


VSA arts of Michigan
1920 25th Ave – Ste B
Detroit, MI 48216
(313) 843-2355 (V/TTY)
http://www.vsami.org




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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.
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