Sometimes life just happens and it seems to HAPPEN all at once. Add to it a child with special needs and it is crazy!
As hard as it is to press the pause button on parenting, sometimes you need the proper resources to face the day. Everything you need to know could not be summed up in one parenting book, so I have decided to focus on resources and support networks.
In a support network, you will find parents who are facing similar situations and online support groups can be a safe space where parents find comfort. It may help you feel less alone, answer questions you have beyond the knowledge of your immediate peers, and encourage you to live life beyond a diagnosis.
I encourage you to join group specific to you. child’s Disability. My son has Norrie’s Syndrome, a rare x-linked genetic disorder. So, I joined the Norrie’s Association. I felt a very close bond to many of the families in the group, because they knew what I was going through.
I am breaking these Resources into Three Parts- National, Texas, and the Visually Impaired. There are many more than the ones I will provide and even my lists are long. I encourage you to Join Facebook groups for any organization you are interested in and to find groups that are of interest to you.
Take a moment to review these resources and feel free to bookmark and come back for more.
National Parent Resources
1. Parent to Parent USA -https://www.p2pusa.org/ A support group that matches parents whose children have the same disability. Allows each parent to have contact information and support.
2. The Administration on Disabilities (AoD) - https://acl.gov/about-acl/administration-disabilities Works with states and communities to increase the independence, productivity, and community integration of people with disabilities.
3. Office of Special Education Programs OSEP- https://www2.ed.gov/about/offices/list/osers/osep/index.html Dedicated to improving results for children and youth with disabilities from birth through age 21.
4. The Office of Disability Employment Policy (ODEP) - https://www.dol.gov/agencies/odep/about Develops and influences policies that increase the number and quality of employment opportunities for people with disabilities.
5. The Americans with Disabilities Act (ADA) - https://www.ada.gov/topics/intro-to-ada/ This act of 1990 prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in mainstream American life.
6. The Federation of Children with Special Needs -https://fcsn.org/ Provides information, support, and assistance to parents of children
7. National Youth Leadership Network- https://nyln.org Works to break isolation among people with disabilities aged 16 to 28.
8. Best Buddies - https://www.bestbuddies.org/ An organization to help kids with special needs find friends and be social.
9. Wrights Law- www.wrightslaw.com/bkstore/bks_index.htm Resources on specific disabilities, effective educational practices, tests, evaluations, legal rights and responsibilities, parenting, and children's issues.
10. The Center for Parent Information and Resources (CPIR)- www.parentcenterhub.org A central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs).
11. Department of Aging and Disability Services (DADS) (Moved to Health & Human Services)- https://hhs.texas.gov/services/disability/consumer-directed-services (855) 937-2372 Long Term Care Services Information on long term care services and consumer directed services
11. CSHCN - Children with Special Health Care Needs- http://www.dshs.texas.gov/cshcn/ (800) 252-8023 (CSHCN) is made up of several programs that provide services to children with extraordinary medical needs, disabilities, and chronic health conditions. The CSHCN health care benefits program pays for medical care, family support services, and related services not covered by Medicaid, CHIP, private insurance, or other “third party payor.”
12. Closing The Gap- www.closingthegap.com Computer technology in special education and rehabilitation resource directory, news articles, education, and conference information.
13. Council for Exceptional Children- exceptionalchildren.org/- 888-232-7733 (voice), 866-915-5000 (TTY) An international professional organization dedicated to improving educational outcomes for individuals with exceptionalities. Resources include publications, a clearinghouse on disabilities and the gifted, education resources, and discussion lists.
14. Disabilities, Opportunities, Internetworking, and Technology (DO-IT)- www.uw.edu/doit/ 206-685-DOIT (voice/TTY), 888-972-3648 (voice), 509-328-9331 (voice) Comprehensive set of resources and programs with a focus on access to technology, college, and careers for youth with disabilities.
15. Disability Resources Monthly (DRM) Guide to Disability Resources on the Internet- https://www.disabilityresources.org/drmwww.html Information about legal rights, financial resources, assistive technology, employment opportunities, housing modifications, educational options, transportation, and mobility services.
16. K12 Academics- www.k12academics.com National education and disability resource website
17. National Center on Secondary Education and Transition (NCSET)- ncset@umn.edu, Identifies needs of youth with disabilities to successfully participate in postsecondary education and training, civic engagement, and meaningful employment.
18. National Council on Independent Living (NCIL)- ncil.org/ 202-207-0334 (voice), 1-844-778-7961 (toll-free voice), 202-207-0340 (TTY) Information and resources for people with disabilities and their families regarding independent living.
19. National Standards for Systems of Care for Children and Youth with Special Health Care Needs-cyshcnstandards.amchp.org/app-nationalstandards/ Resources and information on standards and programs for all stages of life for people with disabilities.
20. Office of Disability Employment Policy, U.S. Department of Labor- www.dol.gov/agencies/odep 866-633-7365 (voice), 877-889-5627 (TTY) Resources to enhance the employment of people with disabilities.
21. Office of Special Education and Rehabilitative Services (OSERS) www2.ed.gov/about/offices/list/osers/index.html Provides leadership and financial support to states and local districts to improve results for children and youth with disabilities.
22. PACER Center- www.pacer.org 952-838-9000 (voice), 800-537-2237 (toll-free voice) A coalition of parent groups that provide information on education and advocacy for children with disabilities.
23. Center for Parent Information and Resources- www.Parentcenterhub.org/resources (973)642-8100 Disability library and information on related services.
24. eParent- www.eparent.com (877) 372-7368 eParent.com is an online multi-media company dedicated to be the ultimate resource for everything related to the special needs community
25. NORD (National Organization for Rare Disorders) -/www.rarediseases.org (800) 999-6673 Information and referrals on rare disorders
26. MUMS (Mothers United for Moral Support)-www.netnet.net/mums/ (920) 336-5333 National parent to parent network which provides information and (877) 336-5333 emotional support to parents whose child has a rare disorder. (toll free for parents only)
27. NIH (National Institute of Health)- www.nih.gov - (301) 496-4000 Stephen Groft at the office of rare diseases provides information on which hospitals and physicians are doing research or clinical trials on any disease
28. NAMI (National Association for Mental Illness)-www.nami.org (800) 950-6264 Provides information and training programs for caregivers of individuals with mental health issues or brain disorders
29. National Fathers Network - www.fathersnetwork.org (425) 653-4286 Provides training and emotional support for fathers of children with special health care needs and developmental disabilities.
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