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RESOURCES

There is currently one support group: Parents of kids with a szt2 gene mutation. This is a parent support group that is exclusive to parents of those diagnosed with SZT2 genetic variation, an inviting and supportive group where you can share your experiences, challenges, and accomplishments!


 

UNITED STATES

 

Citizens United for Research in Epilepsy (CURE) and Epilepsy Genetics Initiative (EGI)

CURE is the leading nongovernmental agency fully committed to funding research in epilepsy. Its mission is to find cure for epilepsy by promoting and funding patient-focused research.

more information can be found in CURE website: https://www.cureepilepsy.org/

 

The Epilepsy Genetics Initiative (EGI) was created by CURE to connect between patients, clinicians and researchers and tailor advances in medical care and decision-making to the patients. 

The EGI has created a centralized database to hold and analyze the genetic data of people with epilepsy.

The data (called exome data) will be analyzed until the cause of the person's epilepsy is found. Findings will be reported back to the person's doctor. The data will also be made available to advance research.

Web Address:  https://www.cureepilepsy.org/egi/

Epilepsy Foundation (America)

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

More information can be found at: https://www.epilepsy.com/learn

Special Needs Answers

The Academy of Special Needs Planners consists of special needs planning professionals such as attorneys, financial planners, and trust officers that assist them in providing service and advice to special needs individuals and to their families.

Medicaid Waiver Programs

Each state in the USA has a medicaid waiver program for which services are needs based.  These programs can assist with medical co-pays, medical equipment, and in some cases in-home assistance.  Each state's program is different; for example, the program is funded through TEFRA/Katie Beckett Deeming Waiver in the state of Georgia and through OPWDD in the state of New York.  To find the program available in your state, visit Medicaid's State Resource Center to find these and other programs that you may be eligible for in your state.

 

The Individuals with Disabilities Education Act (IDEA)

The Individuals with Disabilities Education Act (IDEA) IDEA is a law enacted in the USA in 1975, ensuring services to children with disabilities throughout the country. IDEA governs how states and public agencies provide early intervention, special education, and related services to infants, toddlers, children, and youth with disabilities who are eligible. Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B.

See the list below for the website and phone number of the Early Intervention office in your state.

 

Alabama 
Early Intervention Program
800-543-3098
http://rehab.alabama.gov/individuals-and-families/early-intervention/ei-general-information

 

Alaska
Early Intervention Infant Learning Program (ILP)
(877) 477-3659
http://dhss.alaska.gov/dsds/Pages/infantlearning/default.aspx

 

Arizona
Arizona Early Intervention Program (AZEIP)
(602) 635-9799 or Toll Free: (800) 237-3007
https://des.az.gov/services/disabilities/developmental-infant

 

Arkansas
First Connections
(501) 682-8158
(800) 643-8258 (in AR)
https://dhs.arkansas.gov/dds/firstconnectionsweb/#fc-home

 

California
Early Start
(916) 654-3681
(800) 515-2229
http://www.dds.ca.gov/EarlyStart/WhatsES.cfm

 

Colorado
Early Intervention Colorado
888-777-4041
http://www.eicolorado.org

 

Connecticut
CT Birth to Three
(860) 500- 4403
(800) 505-7000
http://www.birth23.org/

 

Delaware
Birth to Three Early Intervention System
(800) 671-0050 (New Castle County) and (800) 752-9393 (Kent and Sussex Counties)
http://www.dhss.delaware.gov/dhss/dms/epqc/birth3/directry.html

 

District of Columbia
Strong Start DC Early Intervention Program
(202) 727-3665
https://osse.dc.gov/service/strong-start-dc-early-intervention-program-dc-eip

 

Florida
Early Steps System
(800) 218-0001
http://www.earlystepsdirectory.com

 

Georgia
Babies Can’t Wait
800-229-2038 or (770) 451-5484 (Atlanta)
http://dph.georgia.gov/Babies-Cant-Wait

 

Hawaii
Early Intervention Section
(808) 594-0066 (for Oahu) or 1-800-235-5477 (for Neighbor Islands)
http://health.hawaii.gov/eis/

 

Idaho
Idaho Infant Toddler Program
(208) 334-5590 or (208) 334-6530
https://healthandwelfare.idaho.gov/Children/InfantToddlerProgram/tabid/4120/Default.aspx

 

Illinois
Early Intervention
(800) 447-6404 or (800) 323-4769
http://www.dhs.state.il.us/page.aspx?item=30321

 

Indiana
First Steps
(800) 545-7763
http://www.in.gov/fssa/ddrs/2814.htm

 

Iowa
Early ACCESS
(888) 425-4371
http://www.iafamilysupportnetwork.org/early-access-iowa/what-is-ea

 

Kansas
Kansas Infant-Toddler Services
(785) 296-6135 or (800) 332-6262
http://www.ksits.org

 

Kentucky
First Steps
(877) 417-8377
https://chfs.ky.gov/agencies/dph/dmch/ecdb/Pages/firststeps.aspx

 

Louisiana
Early Steps
(866) 327-5978 or (225) 342-0095
http://new.dhh.louisiana.gov/index.cfm/page/215

 

Maine
Child Development Services (CDS)
(877) 770-8883
https://www.maine.gov/doe/learning/cds

 

Maryland
Maryland Infants and Toddlers Program
(800) 535-0182
http://marylandpublicschools.org/programs/Pages/Special-Education/MITP/index.aspx

 

Massachusetts
Early Intervention Division
(800) 905-8437 or (617) 624-6060
https://www.mass.gov/orgs/early-intervention-division
http://eiplp.org/ 

 

Michigan
Early On Michigan
(800) 327-5966
http://www.michigan.gov/mde/0,4615,7-140-63533_71666-127141--,00.html

 

Minnesota
Help Me Grow Minnesota
(866) 693-4769
http://helpmegrowmn.org/HMG/index.htm
http://education.state.mn.us/MDE/fam/ecse/

 

Mississippi
First Steps Early Intervention Program
(800) 451-3903 (in MS) or (601) 576-7427 (Jackson area)
http://www.msdh.state.ms.us/msdhsite/index.cfm/41,0,74,html

 

Missouri
First Steps
(866) 583-2392
http://dese.mo.gov/special-education/first-steps

 

Montana
Montana Milestones Early Intervention Program
(406) 444-5647
https://dphhs.mt.gov/dsd/developmentaldisabilities/montanamilestones

 

Nebraska
Early Development Network
http://edn.ne.gov/cms/
(888) 806-6287

 

Nevada
Nevada Early Intervention Services (NEIS) 
(800) 522-0066
http://dhhs.nv.gov/Programs/IDEA/Early_Intervention_Programs/

 

New Hampshire
Family Centered Early Supports and Services
(800) 298-4321 or (800) 852-3345, ext. 5034
https://www.dhhs.nh.gov/dcbcs/bds/earlysupport/refer.htm

 

New Jersey
Early Intervention System
(888) 653-4463 or (800) 322-8174 (Childfind Birth-21)
https://nj.gov/health/fhs/eis/for-families/

 

New Mexico
Family Infant Toddler Program (FIT)
(877) 696-1472
https://nmhealth.org/about/ddsd/pgsv/fit

 

New York
Early Intervention Program
(800) 522-5006 ("Growing Up Healthy" 24-Hour Hotline) or (800) 577-2229 (in NYC)
http://www.health.ny.gov/community/infants_children/early_intervention/

 

North Carolina
Infant Toddler Program (ITP)
(919) 707-5520
https://beearly.nc.gov/index.php/

 

North Dakota
Early Intervention
(800) 755-8529 or (701) 328-8968
http://www.nd.gov/dhs/services/disabilities/earlyintervention/

 

Northern Mariana Islands
Children's Developmental Assistance Center Early Intervention Services (EIS)
(670) 483-3903
(670) 483-3902
http://chcc.gov.mp/index.php/division-of-public-health/maternal-child-health-mch-program/child-development-assistance-center

 

Ohio
Early Intervention
(800) 755-4769 (GROW)
http://ohioearlyintervention.org/

 

Oklahoma
SoonerStart
(405) 521-4880
http://ok.gov/sde/soonerstart

 

Oregon
Early intervention/Early Childhood Special Education
(503) 947-5747 or (503) 947-5728
https://www.oregon.gov/ode/students-and-family/SpecialEducation/earlyintervention/Pages/default.aspx

 

Pennsylvania
Early Intervention Services
(800) 692-7288
http://www.dhs.pa.gov/citizens/earlyinterventionservices/index.htm#.VwbSsnoS5zJ

 

Rhode Island
Early Intervention Program
(401) 462-3425
Website: http://www.eohhs.ri.gov/Consumer/FamilieswithChildren/EarlyIntervention.aspx

 

South Carolina
Baby Net
Phone: 803-898-4439
https://msp.scdhhs.gov/babynet/site-page/refer-child-babynet   

 

South Dakota
South Dakota Birth to Three
(800) 305-3064
https://doe.sd.gov/birthto3/

 

Tennessee
Tennessee Early Intervention System (TEIS)
(800) 852-7157
https://www.tn.gov/education/early-learning/tennessee-early-intervention-system-teis.html

 

Texas
Early Childhood Intervention (ECI) Services
(877) 787-8999 (select option 3)
https://hhs.texas.gov/services/disability/early-childhood-intervention-services

 

Utah
Baby Watch Early Intervention Program
(800) 961-4226
http://utahbabywatch.org/

 

Vermont
Children's Integrated Services – Early Intervention
Phone: (802) 769-6174
http://dcf.vermont.gov/child-development/cis/IDEA_part_C

 

Virginia
Early Intervention Services
(800) 234-1448
http://www.infantva.org
http://dbhds.virginia.gov/developmental-services/early-intervention-for-infants-and-toddlers

 

Washington
Early Support for Infants and Toddlers (ESIT)
(800) 322-2588
https://www.dcyf.wa.gov/services/child-development-supports/esit

 

West Virginia
WV Birth to Three
(866) 321-4728 (in WV only)
http://www.wvdhhr.org/birth23/referral.asp

 

Wisconsin
Birth to 3 Program
https://www.dhs.wisconsin.gov/birthto3/index.htm
https://www.dhs.wisconsin.gov/birthto3/contacts/countycontacts.htm

 

Wyoming
Infant Toddler Program
Phone: (307) 777-5246 or 1-877-996-4769
https://health.wyo.gov/behavioralhealth/early-intervention-education-program-eiep/

UNITED KINGDOM

SEND (children with Special Education Needs & Disabilities) is a program in the UK to develop an education, health, and care (EHC) plan for children and young people up to age 25 who need more support than is available through special educational needs support. EHC plans identify educational, health, and social needs and set out the additional support to meet those needs.

DLA 

(Disability Living Allowance for Children) is a program in the UK which may help with the extra costs associated with caring for a child under the age of 16 and who has difficulties walking or needs much more care than a child of the same age who does not have a disability and meets all other eligibility requirements.

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