Updated October 2010
Families with a child who has a disability have special concerns and often need a great deal of information: information about the disability of their child, about school services, therapy, local policies, funding sources, transportation, medical facilities, and much more. Many families find it very useful to join a parent group, which is what this page is all about.
- Why join a parent group?
- Your PTI and CPRC
- The Parent to Parent Program
- Parent Groups on Specific Disabilities
- None of that worked?
Why Join a Parent Group?
When families join a parent group, they can meet other families with similar needs. Parent groups can serve many purposes, but one of their most important can be to introduce families to others like themselves. While it’s true that many online parent groups never actually meet in person, the interactions online can provide much needed information and emotional support. Often, though, parent groups form locally, so that families can meet in person.
In person or online, when families with similar concerns meet, there is a sense of community, of understanding. You create a place where you can laugh about the same things, where you can discuss the same problems, where you can help each other. Where else can a parent find out which local dentists are good with children who don’t sit still, where to buy specialized clothes, toys, or equipment, how to help a teenager find a summer or after-school job, or how to fill out a social security application?
This page of NICHCY’s website will help you identify the parent groups that exist nationally and in your state and community. It will also help you decide which group or groups would be useful to you in meeting your family’s needs and concerns.
Your PTI and CPRC
PTI stands for Parent Training and Information. Each state has at least one PTI program. If you’re looking for resources in your state and community, call your state’s PTI. The PTI can also give you information about disabilities, the educational rights of your child, or strategies for being an effective advocate for your child.
Similarly, some states also have what’s known as a CPRC—Community Parent Resource Center, which is funded to serve a particular high-need area or audience.
NICHCY offers several resources about PTIs and CPRCs. These include:
NICHCY’s Parent Basic on PTIs and CPRCs, which will give you a clear description of what these centers do—and what they can do for you and your family. Find this publication at:
Our State Organizations lists (there’s one for every state and territory), which will list your state’s PTI and CPRC. You’ll find that resource sheet at:
On the State Organizations page, select your state. From the drop-down menu, select “Organizations for Parents.” Submit your search. Results will include the PTI and CPRC listings. And remember—often, they have local offices. So even if not located nearby, they may have a satellite office in your area.
The Parent to Parent Program
Ever wish you could talk to another parent whose child has the same disability as yours? The Parent to Parent Program may be for you, then. It matches parents in one-on-one relationships for sharing information, experiences, and emotional and practical support.
Use NICHCY’s resources to learn more about, and connect with, your state’s parent to parent program. For example:
- Read our Parent Basic about the Parent to Parent Program, including how to get in touch with the one in your state.
English version | http://nichcy.org/wp-content/uploads/docs/bp2.pdf
Spanish version | http://nichcy.org/espanol/publicaciones/apoyo
- Our State Organizations list, which we mentioned above. The Parent to Parent program for your state is listed on your state’s organizational list, under the category “Organizations for Parents.” You’ll find your state’s list at:
Parent Groups on Specific Disabilities
There are many, many parent groups that focus on issues and concerns related to a particular disability. For example, local parents whose children have a learning disability may group together to talk about how to handle their child’s education, find a local dentist or pediatrician, and put their heads together to troubleshoot any number of common concerns.
How do you find such a group in your area? We’d suggest trying any of the resources below. They’ll start you at the national or state level, where you can find a group (if one exists) in or near your community.
Try our Disability Fact Sheets. We offer fact sheets on a range of disabilities. Most are available in English and Spanish. At the end of each sheet, there’s a resource listing of national level organizations specializing in that disability. If you contact those groups, by phone or via the Web, they can put you in touch with state or local chapters of their group (if they operate chapters, that is).
Fact sheets in English are located at:
There, you’ll find fact sheets on these disabilities:
- Cerebral Palsy*
- Deafness/Hearing Loss*
- Developmental Delay
- Down Syndrome*
- Emotional Disturbance*
- Intellectual Disabilities (formerly Mental Retardation)*
- Learning Disabilities*
- Other Health Impairment*
- Rare Disorders
- Severe/Multiple Disabilities
- Speech-Language Impairments*
- Spina Bifida*
- Traumatic Brain Injury*
- Visual Impairments*
The fact sheets marked with an asterisk above (*) are available in Spanish. Find the Spanish versions at:
Consult NICHCY’s State Organizations list for your state. There’s a section called “Disability-Specific Organizations.” Within that section, state chapters of disability groups are listed. See if there’s a listing for the disability in which you’re interested.
Would you like to explore one of the other resource pages in this section?
If so, use these quick-jump links to hop to the page of your choice.
- State Agencies Addressing Disabilities
- Parent Groups (you’re already here!)
- Disability Groups
- Meet the TA&D Network
- Mental Health Resources
- Resources within the Medical and Healthcare Community
- Services for Adults with Disabilities