Maryland

Maryland

ADA Center
Mid-Atlantic ADA Center
401 North Washington Street, Suite 450
Rockville, MD, 20805
http://www.adainfo.org


Assistive Technology
Maryland Technology Assistance Program
217 E Redwood Street
Baltimore, MD, 21202
http://mdod.maryland.gov


Autism
Autism Society of Baltimore-Chesapeake Chapter
PO Box 10822
Baltimore, MD, 21234
http://www.bcc-asa.org


Pathfinders for Autism
303 International Circle, suite 110
Hunt Valley, MD, 21030
http://www.pathfindersforautism.org


Career & Technical Education
Division of Career Technology and Adult Learning
200 W. Baltimore Street
Baltimore, MD, 21201
(401) 767-0635
jennifer.griffin@maryland.gov
http://marylandpublicschools.org/programs/Pages/CTE/careerdevelopment.aspx


CHIP
(health care for low-income uninsured children)
Maryland Children’s Health Program
For referral to your local program call:
https://mmcp.dhmh.maryland.gov/chp/SitePages/Home.aspx


Department of Disabilities
217 E. Redwood Street, Suite 1300
Baltimore, MD, 21202
http://www.mdod.maryland.gov


Developmental Disabilities Administration
Department of Health and Mental Hygiene
201 W. Preston Street, Room 422C
Baltimore, MD, 21201
http://msa.maryland.gov/msa/mdmanual/16dhmh/html/16agen.html#developmental


Developmental Disabilities Council (DD Council)
Maryland Developmental Disabilities Council
217 E. Redwood Street, Suite 1300
Baltimore, MD, 21202
http://www.md-council.org


Early Childhood
Maryland State Department of Education
Special Education
200 W. Baltimore St.
Baltimore, MD, 21201
(410) 767-0238
marcella.franczkowski@maryland.gov
http://marylandpublicschools.org/programs/pages/special-education/index.aspx


Epilepsy
1340 Smith Ave., Suite 200
Baltimore, MD 21209
(800) 332-1000
(301) 9182100
http://www.epilepsy.com/local/maryland


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
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
http://www.ncil.org


Intellectual & Developmental Disabilities
The Arc of Maryland, Inc.
121 Cathedral Street, 2B,
Annapolis, MD 21401
http://www.thearcmd.org


Learning Disabilities
LDA Maryland
P.O. Box 744
Dunkirk, MD, 20754
http://www.ldamd.org


Mediation
Office of Administrative Hearings
11101 Gilroy Road
Hunt Valley, MD, 21031
http://www.oah.state.md.us/


Mental Health
Mental Health Association of Maryland
Heaver Plaza
1301 York Road, Suite 505
Lutherville, MD 21093
http://www.mhamd.org


NAMI MD, National Alliance on Mental Illness of Maryland
10630 Little Patuxent Parkway, sSite 475
Columbia, MD, 21044
http://namimd.org


Mental Hygiene Administration
Department of Health and Mental Hygiene
201 W. Preston Street
Baltimore, Maryland 21201
http://dhmh.maryland.gov


Mental Health – Youth
Mental Hygiene Administration
Office of Child and Adolescent Services
Department of Health and Mental Hygiene
201 W. Preston Street
Baltimore, Maryland 21201
http://phpa.dhmh.maryland.gov/mch/SitePages/child_health.aspx


Parent Organizations
Maryland Coalition of Families for Children’s Mental Health
10632 Little Patuxent Parkway, Suite 119
Columbia, MD, 21044
http://www.mdcoalition.org


Parent Teacher Association (PTA)
Maryland PTA
5 Central Avenue
Glen Burnie, MD, 21061
http://www.mdpta.org


Parents’ Place of Maryland, Inc.
801 Cromwell Park Drive, Suite 103
Glen Burnie, MD, 21061
http://www.ppmd.org


Family Support Services, Division of Special Education
Maryland State Department of Education
200 W. Baltimore Street, 9th Floor
Baltimore, MD, 21201
http://www.marylandpublicschools.org/msde/divisions/earlyinterv/infant_toddlers/about/family_support_services.htm


Protection & Advocacy
Disability Rights Maryland
1500 Union Ave., Suite 2000
Baltimore, MD, 21211
(410) 727-6352/(800) 233-7201
http://disabilityrightsmd.org/


Relay Services
(800) 201-7165 (V/TTY)
(800) 735-2258 (TTY/HCO); 711 (TTY)
(888) 826-9673 (VCO)
(800) 785-5630 (Speech to Speech)
(877) 735-5151 (ASCII)
(877) 258-9854 (2-Line VCO)
(800) 877-1264 (Spanish)
(900) 344-3323 (pay per call, English)
(900) 344-4889 (pay per call, Spanish)


Special Education
Maryland State Department of Education
Division of Special Education/Early Intervention Services
200 W. Baltimore Street, 9th Floor
Baltimore, MD, 21201-2595
http://www.marylandpublicschools.org/MSDE/divisions/earlyinterv/


Division of Special Education/Early Intervention Services
Student Achievement and Professional Development
200 W. Baltimore Street, 9th Floor
Baltimore, MD, 21201
http://www.marylandpublicschools.org/MSDE/divisions/earlyinterv/


Special Format Books for Children and Youth
Maryland State Department of Education
200 W Baltimore St.
Baltimore, MD, 21201-2595
(410) 230-2424/(800) 964-9209
reference.desk@maryland.gov
http://marylandpublicschools.org/about/pages/dlds/lbph/index.aspx


Special Health Care Needs
Office for Genetics & People With Special Health Care Needs
201 W. Preston, #421A
Baltimore, MD, 21201
http://phpa.dhmh.maryland.gov/genetics/SitePages/Home.aspx


Speech, Language, and Hearing
Maryland Speech-Language-Hearing Association
P.O. Box 31
Manchester, MD, 21102
(410) 239-7770
office@mdslha.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.maryland.gov


UCEDD
Maryland Center for Developmental Disabilities
Kennedy Krieger Institute
716 N. Broadway, Office 103
Baltimore, MD 21205
http://mcdd.kennedykrieger.org/


Vocational Rehabilitation
Maryland Department of Education
Division of Rehabilitation Services
2301 Argonne Drive
Baltimore, MD, 21218-1696
(410) 554-9442/(888) 554-0334
http://dors.maryland.gov/Pages/default.aspx


Easter Seals Greater Washington-Baltimore Region, Inc.
1420 Spring Street
Silver Spring, MD 20910
http://www.easterseals.com/DCMDVA/


Easter Seals Delaware and Maryland’s Eastern Shore
61 Corporate Circle
New Castle, DE 19720
http://www.de.easterseals.com


Family Net Works Program
1001 Eastern Avenue, 2nd floor
Baltimore, MD, 21202
http://marylandfamilynetwork.org/


The Coordinating Center (for individuals with complex medical needs and disabilities)
8531 Veterans Highway, 3rd floor
Millersville, MD, 21108
http://www.coordinatingcenter.org


Abilities Network
8503 LaSalle Rd
Towson, MD 21286
(800) 492-2523
(410) 828-7700
www.abilitiesnetwork.org


Resource Finder
(information on developmental disability resources)
A project of Kennedy Krieger Institute
707 N. Broadway
Baltimore, MD, 21205
https://www.kennedykrieger.org/community/initiatives/resource-finder



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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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