Pennsylvania

Pennsylvania

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


Assistive Technology
Pennsylvania’s Initiative on Assistive Technology
Institute on Disabilities
1755 N. 13th Street
Student Center, Room 411S
Philadelphia, PA, 19122
http://disabilities.temple.edu/programs/assistive/piat/


Autism
ABOARD (Advisory Board on Autism and Related Disorders)
35 Wilson Street, Suite 100
Pittsburgh, PA, 15223
www.autism-support.org


AutismLink
376 Wagon Wheel Trail
Wexford, PA, 15090
http://www.autismlink.com/pennsylvania


Autism Society of Pittsburgh
4371 Northern Pike
Monroeville, PA, 15146-2837
http://www.autismsocietypgh.org


Autism Society of Greater Philadelphia
1036 Nash Avenue
Lansdale, PA, 19446
http://www.asaphilly.org


Career and Tech Ed
Bureau of Career and Technical Education
Division of Field Support
Department of Education
333 Market Street, 11th Floor
Harrisburg, PA, 17126-0333
http://www.pde.state.pa.us


CHIP
(health care for low-income uninsured children)
Pennsylvania’s Children’s Health Insurance Program
http://www.chipcoverspakids.com/


D D Council
Developmental Disabilities Council
561 Forum Building, Commonwealth Avenue
Harrisburg, PA, 17120
http://www.paddc.org


Developmental Disabilities
Pennsylvania Department of Human Services
P.O. Box 2675
Harrisburg, PA, 17105-2675
http://www.dhs.pa.gov/learnaboutdhs/dhsorganization/officeofdevelopmentalprograms/


Early Intervention
Pennsylvania Department of Human Services
P.O. Box 2675
Harrisburg, PA, 17105-2675
http://www.dhs.pa.gov/citizens/earlyinterventionservices/


Epilepsy
Epilepsy Foundation Western/Central Pennsylvania
Locations in Pittsburgh, Harrisburg and Johnstown – http://www.efwp.org/contact/Contact.xml
http://www.efwp.org


Epilepsy Foundation of Eastern Pennsylvania
919 Walnut Street, Suite 700
Philadelphia, PA, 19107-5237
http://www.efepa.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-results/PA


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 Pennsylvania
101 S. Second Street, Suite 403, Executive House
Harrisburg, PA, 17101
http://www.thearcpa.org


Learning Disabilities
Learning Disabilities Association of Pennsylvania
info@ldaamerica.org
https://ldaamerica.org/lda-chapters/lda-of-pennsylvania/


Mediation
Office for Dispute Resolution
6340 Flank Drive, Suite 600
Harrisburg, PA, 17112
(717) 541-4960
http://odr-pa.org


Mental Health
Pennsylvania Department of Human Services
P.O. Box 2675
Harrisburg, PA, 17105-2675
http://www.dhs.pa.gov/citizens/mentalhealthservices/


NAMI Pennsylvania
2149 N. Second Street
Harrisburg, PA, 17110
http://nami-pa.org


Family & Youth Support & Advocacy Division
1211 Chestnut St., Suite 1100
Philadelphia, PA, 19107
(215) 751-1800
(800) 688-4226
Check website for local offices
http://www.mhasp.org/family-youth


Mental Health – Youth
Pennsylvania Department of Human Services
P.O. Box 2675
Harrisburg, PA, 17105
(717) 705-8289
http://www.dhs.pa.gov/learnaboutdhs/dhsorganization/officeofmentalhealthandsubstanceabuseservices/bureauofchildrensbehavioralhealthservices/index.htm


Parent Organizations
Community Parent Resource Center
(Serving American Street Empowerment Zone and providing intense training sessions to parents of children with disabilities in Philadelphia)
Hispanos Unidos para Ninos Excepcionales
(Philadelphia HUNE, Inc.)
2215 N. American St,
Philadelphia, PA 19133
http://huneinc.org


Parent Teacher Association (PTA)
Pennsylvania Congress of Parents and Teachers, Inc.
4804 Derry Street
Harrisburg, PA, 17111
http://www.papta.org


Parent to Parent of Pennsylvania
6340 Flank Drive, Suite 600
Harrisburg, PA, 17112-2764
http://www.parenttoparent.org


Partners in Policymaking
Institute on Disabilities/University Center for Excellence
Temple University
University Services Building, Room 610
1601 N. Broad Street
Philadelphia, PA, 19122
http://disabilities.temple.edu


Preschool, Disabilities
Bureau of Early Intervention Services
Office of Child Development and Early Learning
Department of Education and Public Welfare
333 Market Street, 7th Floor, PDE Building
Harrisburg, PA, 17126-0333
http://www.pde.state.pa.us


Protection & Advocacy
Disability Rights Network of Pennsylvania
1414 N. Cameron Street, Suite C
Harrisburg, PA, 17103
http://www.drnpa.org


Relay Services
(800) 654-5988 (V)
(800) 654-5984 (TTY); 711 (TTY)
(800) 229-5746 (Speech to Speech – English)
(866) 260-9470 (Speech to Speech – Spanish)


Special Education


Bureau of Special Education
Department of Education
333 Market Street, 7th Floor
Harrisburg, PA, 17126-0333
Special Education Consultline: (800) 879-2301(V/TTY)
http://www.pde.state.pa.us


The Camphill School
1784 Fairview Rd
Glenmoore, PA 19343
610-469-9236
http://camphillschool.org


Special Format Library
Free Library of Philadelphia
Library for the Blind and Physically Handicapped
919 Walnut Street
Philadelphia, PA, 19107
(215) 683-3213
https://libwww.freelibrary.org/locations/library-for-the-blind-and-physically-handicapped


Special Health Care Needs
Division of Community Systems Development and Outreach
Division of Child and Adult Health Services
Department of Health, 7th Floor, East Wing
Health & Welfare Building
7th & Forster Street
Harrisburg, PA, 17120
http://www.state.pa.us


PA Special Kids Network
http://www.gotoskn.state.pa.us/portal/server.pt/community/special_kids_network/14205


Speech, Language, and Hearing
Pennsylvania Speech-Language-Hearing Association
700 McKnight Park Drive, Ste 708
Pittsburgh, PA 15237
http://www.psha.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.pa.gov/


Transition Services
Pennsylvania Training and Technical Assistance Network (PATTAN)
3190 William Pitt Way
Pittsburgh, PA, 15238
http://www.pattan.net


Variety - the Children's Charity of the Delaware Valley
2950 Potshop Road
PO Box 609
Worcester, PA 19490
Phone: 610.584.4366
Fax: 610.584.5586
varietyphila.org


The Camphill School
551 W Seven Stars Rd
Phoenixville, PA 19460
610-469-9236
http://camphillschool.org


UCEDD
Institute on Disabilities/ UCEDD
Temple University
1755 N 13th Street, Suite 411
Howard Gittis Student Center, South
Philadelphia, PA, 19122
http://disabilities.temple.edu


Vocational Rehabilitation
Office of Vocational Rehabilitation
Department of Labor and Industry
1521 N. 6th Street
Harrisburg, PA, 17102
http://www.dli.state.pa.us/portal/server.pt/community/vocational_rehabilitation/10356


Easter Seals of Western and Central Pennyslvania
2525 Railroad St
Pittsburgh, PA 15222 (888) 372-7280
http://www.easterseals.com/wcpenna/


Easter Seals of Southeastern Pennsylvania
3975 Conshohocken Avenue
Philadelphia, PA, 19131
http://www.easterseals-sepa.org


Pennsylvania Parents and Caregivers Resource Network
P.O. Box 4336
Harrisburg, PA, 17111-0336
http://www.ppcrn.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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