How to Start a Group for Parents of Kids with Special Needs

Organizations for parents of kids with special needs are emerging across the country as both parents and schools recognize the benefits for students.

While this piece presents an approach for developing a parent group for parents of children with learning disabilities, these same steps can be used to organize a group for parents of kids with any type of special needs.


Step 1: Develop a partnership with your school district

The most effective parent groups are partnerships between parents and schools. The special education director for the school district is responsible for developing programs for students with learning disabilities. This person is in the position to help you establish your parent group and can benefit from its existence.

If the parent group and special education director work together to identify needs and develop a plan, they will find their goals overlap. The goal of a parent group is to help other parents help their kids. The goal of the special education director is to help the students, which often means involving the parents.

The parent group can help:

• identify needs
• develop program ideas
• communicate to the parent network

If the special education director develops a good working relationship with the parent group, he or she will benefit from the contributions of parent volunteers by getting help developing and implementing parent programs. The group can also provide a forum for soliciting feedback on new programs for special education students.

The benefits to the parent group in working with the special education director are twofold:

• The special education department can send out e-mails or mailings to the school district’s list of parents of kids with special needs that the parent group wouldn’t otherwise have access to due to privacy laws.
• Second, the partner relationship with the special education director provides a way for parents to contribute and communicate ideas for new programs directly with the school and/or district.


Step 2: Identify the needs in your community

It is important to identify the specific needs in your community by first defining the need, then determining whether or not the need is already met. Meet with other parents to find out what type of learning problems their kids have and what type of information and support they need. To maximize parent input, develop a survey to send out to all parents of special needs kids in your district.

You might develop a matrix with the learning problems listed down one side, and different areas that a parent group might help, such as support groups, resource information and educational lectures across the top. Identify other local groups that already meet these needs in order to identify the gaps or areas where your group can offer help.

Step 3: Consider partnering with other organizations

It might be most effective for you to develop an independent parent group within your district, but you should still look at various partnerships that might provide benefits. For instance, you might decide to form a local Learning Disabilities Association (LDA) chapter, become a special interest group within the Parent Teacher Association (PTA) or join forces with another school district. The potential advantages of working with other organizations include access to existing communications networks and potential funding sources, as well as increased visibility within your community.

Step 4: Write a strategic plan

Your plan should include a mission statement, which defines a long-term vision for your group. In addition, develop 1- to 3-year goals and objectives. Make sure the goals are specific, measurable and doable, so you can later evaluate the success of your program. Assign individuals responsibility for each task.

While writing the plan, make sure you:

• prioritize projects based on parent interest and available resources
• start with low-cost programs and evolve into more time-intensive programs
• take advantage of existing resources

There is a great deal of information available on the Internet that can be adapted for your community. One Web site that you might explore for ideas is

Step 4: Recruit volunteers for your planning committee

Many parents feel that their children’s learning problems are a private manner and that joining a parent group will expose their children’s issues. However, if the parent group is filling needs in the community, other parents will take notice and eventually offer their help. Make sure you ask your volunteers how they would like to help to ensure you utilize their individual talents and maintain their interest in the organization.

Step 6: Develop a communications plan

You will need to develop a plan for communicating within your planning committee, as well as communicating with other parents. Determine how often your committee will meet and who will record and distribute the meeting minutes.

Additionally, if possible, create a Web site that is linked to the school district web site so parents new to the community—or with children not currently receiving special services at school—have access to information.

Step 7: Evaluate the effectiveness of your program

At the end of each school year, review your strategic plan to make sure it still makes sense. Identify which goals you met, which ones you failed to meet and why. It’s OK to decide that some of the goals are no longer priorities and to replace them with new goals. The plan should be a living document, changing as your parents’ needs change.