With the availability of better screening techniques, the number of children diagnosed with special needs as early as age three has increased astronomically. So has the cost of treatment and education – estimated to be in the billions. Health insurance companies are being flooded with claims from families with special-needs children, and have different out-of-pocket health expenditures depending on the state, says Julie Holmquist, spokesman for the PACER Center, an advocacy group for families of children with disabilities.

That is why parents need to educate themselves about available resources and how to advocate for their children. As one Bergen County parent advises: “Nobody sits you down and gives you a plan to follow to best address your child’s issues; it’s up to you to research, network, and advocate for your child.”

Start by familiarizing yourself with the provisions of the federal Individuals with Disabilities Education Act (IDEA), which mandates that each child receive early intervention and special education, as needed. You can apply for reimbursement for services under IDEA for private school tuition.

Go to the National Dissemination Center for Children with Disabilities http://nichcy.org/ to get information about what is available in the State of New Jersey and elsewhere.

Contact Bergen County Special Services to arrange for free evaluations and supplementary services. http://bcss.bergen.org/. If you think you need more help, consider hiring a private educational consultant to help secure services.

Work with your school to provide all necessary services to help your child learn. Maintain regular contact with teachers and school therapists, and make sure you keep detailed notes of all meetings. If a school is unable to meet your child’s needs, investigate other schools in your area for possible out-of-district placement. If your public school district declines to cover or supplement costs, you may want to consider consulting an education attorney to discuss legal options.

Health Insurance

Ask your child’s primary care physician to write prescriptions for all therapies and your health insurance company to designate one case manager to work with you. Make certain to keep all written records, diagnoses, and evaluations together should you need to appeal a claim that is declined.

If coverage is denied, make certain you get the denial in writing for future appeals to the insurer. All insurance companies are required to have an appeals process.

If you want to deduct your child’s medical expenses from your federal income taxes (to qualify for a deduction, there is a threshold percentage of adjusted gross income that you must be met), keep all records of expenses. This could help your child qualify for Supplemental Social Security Income when he or she reaches the age of 18.

The State of New Jersey has a Medicaid Waiver Program, which enables parents who do not qualify for standard Medicaid to apply for a waiver for a child with disabilities. To find out if you would qualify, contact the New Jersey Division of Disability Services – http://www.state.nj.us/humanservices/dmahs/home/waiver.html.

Company Employee Benefits

Find out if your company has any specific benefits to help defray your child’s special-needs costs. If there is a plan that allows you to set aside pre-tax dollars to cover medical expenses (often called “flexible spending accounts”), use it!

Parents’ Support Networks and Organizations
There are myriad disability-specific organizations that serve as information clearinghouses and networking opportunities. Among them:

Minds Moving Forward (NJ) – http://www.movingmindsff.org/Mission_Statement.html

Statewide Parent Advocacy Network (SPAN) – http://www.spannj.org/

Council of Parent Attorneys and Advocates – http://www.copaa.org/