Louisiana

Louisiana

ADA Center
Southwest ADA Center
2323 S. Shepherd, #1000
Houston, TX, 77019
http://www.southwestada.org


Assistive Technology
Louisiana Assistive Technology Access Network
P.O. Box 14115
Baton Rouge, LA, 70898
http://www.latan.org


Autism
Autism Society of Louisiana
P.O. Box 80162
Baton Rouge, LA, 70898
http://www.lastateautism.org


CHIP
(health care for low-income uninsured children)
Louisiana Children’s Health Insurance Program
LaCHIP Processing Office
628 N. 4th Street
P. O. Bo 629
Baton Rouge, LA 70821-0629
http://new.dhh.louisiana.gov/index.cfm/page/222


D D Council
Louisiana Developmental Disabilities Council
P.O. Box 3455
Baton Rouge, LA, 70821-3455
swinchel@dhh.la.gov
http://www.laddc.org


Developmental Disabilities
Office for Citizens with Developmental Disabilities
P.O. Box 3117, Bin 21
Baton Rouge, LA, Baton Rouge
http://www.dhh.louisiana.gov


Early Intervention
Louisiana Part C Early Intervention
Office for Citizens with Developmental Disabilities
Louisiana Department of Health & Hospitals
P.O. Box 3117, Bin 21, 682 N. 4th Street
Baton Rouge, LA, 70802
http://www.earlysteps.dhh.louisiana.gov


Epilepsy
Epilepsy Foundation of Louisiana
3701 Canal Street, Suite H
New Orleans, LA, 70119
http://www.epilepsylouisiana.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
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
2013 H St. NW – 6th Floor
Washington, DC, 20006
http://www.ncil.org


Intellectual & Developmental Disabilities
The Arc of Louisiana
8336 Kelwood Drive
Baton Rouge, LA, 70806
http://www.thearcla.org


Learning Disabilities
Division of Educational Improvement and Assistance
Louisiana Department of Education
P.O. Box 94064
Baton Rouge, LA, 70804-9064
http://www.louisianabelieves.com/academics/students-with-disabilities


Mediation
Dispute Resolution
Louisiana Department of Education
1201 North Third Street
Baton Rouge, LA 70802-5243
http://www.louisianabelieves.com/academics/students-with-disabilities/dispute-resolution


Mental Health
Office of Behavioral Health
Louisiana Department of Health and Hospitals
628 N. 4th Street, 4th Floor
P.O. Box 4049
Baton Rouge, LA, 70821-4049
http://new.dhh.louisiana.gov/index.cfm/subhome/10


Mental Health America of Louisiana
660 N. Foster Drive, Suite C-201
Baton Rouge, LA, 70806
http://www.mentalhealthamerica.net/mental-health-america-louisiana


NAMI Louisiana, National Alliance on Mental Illness
P.O. Box 40517
Baton Rouge, LA, 70835
(866) 851-6264
http://www.namilouisiana.org


Louisiana Federation of Families for Children’s Mental Health
5627 Superior Drive, Suite #2
Baton Rouge, LA, 70816-6085
(225) 293-3508


Parent Organizations
Community Parent Resource Center
(Serving greater New Orleans area)
Pyramid Community Parent Resource Center
3132 Napoleon Avenue
New Orleans, LA, 70125
http://www.pyramidparentcenter.org


Families Helping Families of Louisiana
(a statewide network of ten regional family resource centers)
100 Benman Rd. Lafayette, LA 70506
Lafayette, LA 70506
http://www.fhfla.org


Parent Teacher Association (PTA)
Louisiana Parent-Teacher Association
9151 Interline Avenue, suite 1A
Baton Rouge, LA, 70809
http://www.louisianapta.org/


Preschool, Disabilities
Division of Standards, Assessments and Accountability
Louisiana Department of Education
1201 North Third Street
P.O. Box 94064
Baton Rouge, LA 70802-5243
http://www.louisianabelieves.com/early-childhood/early-childhood-programs


Protection & Advocacy
Advocacy Center
8325 Oak Street
New Orleans, LA, 70118
http://www.advocacyla.org


Relay Services
(800) 947-5277 (V)
(800) 846-5277 (TTY); 711 (TTY)
(888) 550-5277 (ASCII)
(888) 272-5530 (Speech to Speech)
(800) 737-1813 (Spanish)


Speech, Language, and Hearing
Louisiana Speech-Language-Hearing Association
8550 United Plaza Boulevard, Suite 1001
Baton Rouge, LA, 70809
http://www.lsha.org


Special Education
Louisiana Department of Education
1201 North Third Street
P.O. Box 94064
Baton Rouge, LA 70802-5243
http://www.louisianabelieves.com/academics/students-with-disabilities


Special Format Library
State Library of Louisiana
Talking Books
701 N. Fourth Street
Baton Rouge, LA, 70802
http://www.state.lib.la.us/special-services/talking-books


Special Health Care Needs
Louisiana Department of Health and Hospitals
Office of Public Health
Children’s Special Health Services
1450 L & A Road
Metairie, LA, 70802
http://new.dhh.louisiana.gov/index.cfm/page/740


Families Helping Families
286 Highway 3185
Thibodaux, LA, 70301
(985) 447-4461
(800) 331-5570
Bayoulandfhf@blfhf.org
http://blfhf.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.louisiana.gov


UCEDD
Louisiana UCEDDERS
LSUHSC- Human Development Center
School of Allied Health Professions
1900 Gravier Street 10th Floor Room 1036
New Orleans, LA, 70112
http://www.hdc.lsuhsc.edu


Vocational Education and Rehabilitation
Louisiana Workforce Commission
Vocational Rehabilitation Program
1001 N 23rd St
Baton Rouge, LA, 70802
(225) 342-3111
http://www.laworks.net/workforcedev/lrs/lrs_rehabilitation.asp


Easter Seals Louisiana
1010 Common St., Suite 2000
New Orleans, LA, 70112-1617
http://www.louisiana.easterseals.com


Special Olympics Louisiana
1000 E. Morris Avenue
Hammond, LA, 70403
http://www.laso.org


Louisiana Occupational Therapy Association
P.O. Box 14806
Baton Rouge, LA, 70898
http://www.lota.org


Louisiana Health and Rehabilitation Center, Inc.
2121 Wooddale, Blvd
Baton Rouge, LA, 70806
http://www.lahealthandrehab.org


Louisiana Citizens for Action Now (LACAN)
Post Office Box 3455
626 Main Street, Suite A
Baton Rouge, LA 70821-3455
http://www.lacanadvocates.org


Governor’s Office of Disability Affairs
P.O. Box 94004
Baton Rouge, LA, 70804-9004
(225) 219-7550
(844) 860-1413
disability.affairs@la.gov
http://gov.louisiana.gov/page/disability-affairs






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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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