Advocating for Your Child

Advice for families and caregivers

An advocate is someone who promotes the cause of another person. As the parent of a child with special needs, you will have to advocate for her throughout her life.

Q&A for Special Needs and Advocating for Your Child

When should I begin advocating for my child?
What laws should I become familiar with?
What else do I need to do in order to be an effective advocate?
How assertive do I need to be?
What if none of the services offered seem right for my child?
Is there one tip that will help me advocate successfully?
Are there other options besides Special Education?
How can I find someone to care for my child with special needs?

When should I begin advocating for my child?

Once your child has been diagnosed with a special need that qualifies (meaning she has either an autism spectrum disorder, speech or language impairments, emotional problems, specific learning disabilities, traumatic brain injury, visual or hearing impairment, or another health impairment) by interfering with her ability to learn, then she is considered disabled and eligible for Early Intervention services from birth until the age of 3. These Early Intervention services, provided by a team of specialists ranging from occupational, physical and speech therapists to social workers, are essential for boosting your child's ability to develop to her maximum capacity.
When your child turns 3, if she has already qualified for Early Intervention services, she is now entitled to Special Education until she turns 22, in the "least restrictive environment." You and representatives of the school department will meet once a year to collaboratively work out an Individualized Education Program (IEP) for your child. It is appropriate to get recommendations for intensive services from the specialists you have gotten to evaluate your child. And you may also want to have an outside advocate attend meetings with you to help work out an education plan with which you are satisfied.
Some children have disabilities that do not qualify for Special Education. These children may be handicapped, but not considered to need formal Special Education services, although certain accommodations may need to be made. These children would fall under the realm of Section 504 of the Rehabilitation Act of 1973.which grants them civil rights, but not access to Special Education services.

What laws should I become familiar with?

Become familiar with disability laws that apply to your child both on a national and state level so that you know your rights.
The Individuals with Disabilities Education Act (IDEA), revised in 2004 and renamed the Individuals with Disabilities Education Improvement ACT, requires that each state provide all eligible children with "a free and appropriate education" that meets their unique needs. This act also states that parents are entitled to be treated as equal partners in formulating an educational plan that meets their child's needs.
Handicapped children who are not eligible may fall under Section 504 of the Rehabilitation Act of 1973. To be eligible for protections under Section 504, the child must have either a physical or mental impairment that substantially limits at least one "major life activity." Major life activities include walking, seeing, hearing, speaking, breathing, learning, reading, writing, performing math calculations, working, caring for oneself, and performing manual tasks. The key is whether the child has an "impairment" that "substantially limits . . . one or more . . . major life activities."

What else do I need to do in order to be an effective advocate?

Educate yourself about your child's disability and what treatments are most effective.
To support your advocacy, you will need to closely observe your child and keep detailed notes, citing specific interventions and the conditions that occurred at the time of those interventions, which interventions resulted in which positive results, and which seemed to be counterproductive because of certain results.
Carefully evaluate whether or not a new intervention is successful, giving precise reasons for your conclusions, and make sure a more effective intervention is substituted.

How assertive do I need to be?

In order to successfully advocate for your child, you will need to be assertive but not hostile. If your child will be mainstreamed in a public school classroom, the assistance of a one-on-one aide may be required, or perhaps other special accommodations will need to be made. If an aide is provided and your child has autism, this aide should have been trained and educated in autism, or in whatever your child's special need is.

What if none of the services offered seem right for my child?

As an advocate for your child, you may determine that the services offered are inadequate, and that although needed services currently do not exist, they must still be furnished.
If a Behavior Intervention Plan is devised, you will need to closely monitor the situation to be sure that the environment changes as specified to avoid triggers. If the environment isn't modified as outlined in the plan, you have legal remedies.

Is there one tip that will help me advocate successfully?

From the very beginning, it is important to keep records (perhaps more than one copy, in different places) of all meetings you attend, all assessments and recommendations based on those assessments, all reports, and any other relevant materials, in a well organized and easy-to-access place.
You have the right to request copies of all school reports on your child.
It is best not to rely on the school to keep and maintain records, as those may be lost.

Are there other options besides Special Education?

It may be determined that your child would progress best in

A special needs school.
A home instruction program.
A residential program.

How can I find someone to care for my child with special needs?

Care.com is a website that lists caregivers throughout the United States who provide assistance to people with special needs. You can search for caregivers near you and review caregiver profiles including photos, references and background checks, and work history. For specific listings of special needs caregivers, go to Care.com.

Other resources for Special Needs and Advocating for Your Child

Technical Assistance ALLIANCE for Parent Centers

Parent Training and Information

Find the right special needs caregiver for your family.