Southeast Advocate Associates

From the Advocate's View

Information and ideas for those serving children with special needs

Advocating for Children with Special Needs

Author: Warna Reynders

Advocating for a child with special needs cannot begin until the advocate-to-be understands the disability and its impact on the child.  Advocating is simply educating others about needs.  Advocacy is a skill that can be developed and applied to most areas to help a child with special needs become more successful in life.

Some children are born with a physical or intellectual, learning, neurological or sensory disability; others acquire a disability as a result of a car or recreational accident, acute and chronic illnesses, and even negligence.  For a surprising number of children, their disability will profoundly affect their functional ability for the rest of their lives.  Our society reveres perfection thus children with disabilities struggle to be recognized as individuals and to have the same opportunities as children without impairments.

Advocating for children with special needs requires knowledge of how the disability affects the child’s overall daily functional and relational skills.  In addition it is critical for an advocate to know how the child’s disability to access curriculum in the educational environment is affected.  An example is the child with Spina Bifida who may have good communication skills but is hampered by physical constraints.  A child with Autism may be completely mobile but unable to effectively express needs and wants.

Determine how the disability affects the child

The first step in advocating for a child with a disability is to know the full extent of his/her disabilities.  There are three sources to consider when determining how the disability affects the child.

The first source is the child’s family.  Ask family members or other significant persons in the child’s life which areas present challenges to the child.  Since they live with the child and see how the child functions every day, they are an excellent resource for gaining practical insight.

A second source to gain a greater understanding of the needs created in the child’s and family lives, ask the child, if he/she is able to communicate, to explain their areas of impaired function as well as their areas of ability.  Children cope with disabilities differently.  What is a problem area for others with the same disability may not be a problem for this child.

The third information source is testing by professionals; aptitude testing, psychological testing, speech and language evaluations, physical evaluations, functional behavioral evaluations, neurological, gross motor, fine motor, vision, hearing and medical evaluations, if necessary, can assist in the identification of a child’s areas of need.

Critical in this step is TRUST in the professionals who will do the testing.  Testing can be expensive, but in order to be able to express the needs of the child effectively, it is important to have a good understanding of the child’s weaknesses and strengths.  Medical, neuropsychological and developmental testing is sometimes covered by the family’s insurance.  Educational testing, speech and language evaluations, fine and gross motor evaluations and even behavioral evaluations are provided by the school district free of charge if the parent makes a request in writing.

Do your homework; learn all you can

Once the formal tests and evaluations are completed and the results are in the next step is to begin learning all you can about the disability (ies).  The internet offers an easy method of accessing a plethora of information regarding specific disabilities.  For example, if one does a Google search on “Spina Bifida” in a matter of nanoseconds the results will provide a description of the condition, its causes, symptoms, prognosis, complications and treatment.  The local library, doctors, and related service providers are also excellent sources of information regarding specific disabilities.


References:

Advocating for People With disabilities, vol. 13, No. 5, Matrix Advocare Network, retrieved 5/3/2011,http://www.matrixadvocare.com/newsletters/V13_N5.pdf

Clarke, William L. Advocating for the Child with Diabetes. Retrieved 6/13/2007 fromhttp://journal.diabetes.org/diabetespectrum/99v12n4/pg230.htm

Schulte, Heather. (2009) How to Advocate for Children with Special Needs.  Retrieved 5/3/2011 fromhttp://www.suite1012.com/content/how-to-advocate-a118749?template=article_print.cfm

Warna Reynders