Find an Education Advocate

Special education advocates are individuals who assist families of pre-school and school-aged children to receive timely and apprpriate services. 

In many cases, such advocates may be attorneys, often whose lives have been touched by a person with a disability and therefore who have taken a particular interest in this area of specialization.  In other instances, they may be an individual who has had experience with children with disabilities in their professional capacity as doctors or special education teachers, and who have changed professions.  The use of these professionals to assist parents secure full and appropriate educational assistance for their children is common with respect to other conditions such as autism spectrum disorders, where families seeking timely and appropriate services commonly engage the services of a special education advocate to work on their bahalf with schools and local administrators, and if necessary mediation boards and the courts.

Despite the high incidence levels of X and/or Y chromosome aneuploidies, regrettably few special education advocates are familiar with these conditions.  For this reason, locating well qualified, highly knowledgeable and caring special education advocates represents a significant challenge to families of very young and school age children affected by these conditions, who could use their assistance in working with educators, school districts, special education administrators or early intervention services administrators.

• What Types of Educational Issues Do KS&A Members Confront?



• If It’s the Law, Why Is There a Problem Getting Services?



• Parent-to-Parent Recommendations of Well-Qualified Professionals
• Add a Professional You’ve Used to the List of Education Advocates



• View a List of Education Advocates Suggested by Other Parents

What Types of Educational Issues Do KS&A Members Confront?

X and Y chromosome aneuploidies such as 47,XXY, Trisomy X, 47,XYY and associated conditions have broad and variable expression, from mild or insignificant learning challenges to significant functional and performance problems.  The research literature reports a very high percentage of the individuals with these conditions have some form of learning problems.  Although the symptoms may vary both in type and severity between individuals, these problems can include mild to severe dyspraxia of speech, a discrepancy between verbal and comprehension skills, anxiety, cognitive processing problems, attention issues, and impaired verbal and written expression. 

For many children affected by these conditions, these learning challenges often appear early in life with language expression and become more pronounced with school performance challenges.  In some cases, these problems persist throughout the individual’s life, and in other instances they function more as developmental delays – milestones that the affected individual ultimately attains, albeit later than most of his or her peers.  There is increasing evidence of significant positive results when early intervention services are timely, syndrome specific and address the deficits in a comprehensive way. 

Pre-school and school aged children with these conditions who are having challenges – and even infants and very young children who have yet to encounter any significant problems, but who are known to be “at risk” based solely on a confirmed diagnosis – are likely to qualify for receipt of special services under federal guidelines.  Although laws vary from state to state, Federal laws protect children with disabilities and entitle them to special services that will help him or her to have a successful school life. 

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If It’s the Law, Why Is There a Problem Getting Services?

Parents of children diagnosed with X and/or Y chromosome aneuploidies quickly learn that there is often a problem in accessing these services irrespective of having the law and a confirmed diagnosis on their side. 

In part, this is because children with these conditions are commonly of at least average intelligence and generally have no dysmorphic features such as occur in other, better known but often much more rare genetic conditions.  The other issue concerns the system.  The fact of the matter is that although there is a federal mandate that timely and appropriate services must be provided to children who have special needs and who are at known risk (including the risk of disabilities due to chromosomal disorders), this mandate is not accompanied by a corresponding allocation of funds.  The responsibility for implementing the law (and covering the associated cost) is left to the state and local level.

Thus, although teachers and local administrators probably want the best for your child, it is a regrettable fact that as a practical matter they are also highly concerned about exceedingly tight budgets.  With not enough money to go around, the persons who receive what they are entitled are those who are able to work together with program administrators to come up with what’s best for the child, who know their legal rights and know the proper procedural steps that must be taken.  Being firm, but not demanding; nice, but not overly compliant when the outcome is not appropriate, are often important to success.

Given these challenges of receiving timely and appropriate services, many individuals have found that they benefit from engaging an education advocate – an individual who specializes in children and adolescents with developmental challenges and delays – to assist them.  Depending on their particular training and background, such a consultant can assist with Individualized Education Program (IEP) meetings or administrative and legal recourse if necessary to ensure that the child receives an education appropriate to his or her needs.

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Parent-to-Parent Recommendations of Well-Qualified Professionals

In an effort to help address the difficulty many members have reported in locating qualified education advocates, KS&A is adding a feature that will permit parents to assist other parents to locate education advocates they respect.

In a number of cases, these professionals knew very little about these conditions until they had a client bring it to their attention.  However, they took the time necessary to become familiar with the literature and the latest science, and today are able to impart this knowledge and experience on behalf of new clients.  In other instances, these advocates may be clinicians who became intrigued with one or more of these conditions, conducted research studies, published articles and/or have spoken at conferences.

KS&A’s objective in providing the parent-to-parent recommendation feature is to help you find the best possible education advocates to meet your needs.

KS&A does not endorse any professionals, counselors or centers listed on this or other sites.  Finding a special education advocate that is right for you is a personal process that can take time.  Be sure to find someone you feel you can speak with openly and honestly, and even if they don’t initially know much about X and/or Y chromosome aneuploidy conditions, who will take the time and have the interest to study and learn about them. 

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Listing an Education Advocate

Have you used a special education advocate who has helped you...?

If so, consider listing him or her in KS&A’s parent-to-parent database so that others may be able to find the help they are seeking. Click here to fill out a short questionnaire about the education advocate(s) you recommend.

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Viewing a List of Education Advocates

Are you wonderng whether you might benefit from hiring an education advocate...?  Have you made the decision that you could use the assistance of an education advocate, and looking for someone who has previous experience working with X and/or Y chromosome aneuploidies...?

If so, you may want to take a few minutes and view a list of education advocates recommended by others.  This service is free, and it is confidential.  You can search KS&A’s database by city, state, zip code or by the type of background of the advocates.

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