Around 9.4 million children in the U.S. are estimated to have special health care needs, with some of the most common needs including speech delays, ASD, learning differences, and social and emotional disorders.
Less common are conditions such as cerebral palsy, which though rare, is diagnosed in around 8,000 babies and children every year, with up to 1,500 preschool-aged children being diagnosed with this condition yearly.
Cerebral palsy is just one of many conditions that give rise to ‘complex needs’ – in which two or more needs affect a child’s physical, mental, social or financial wellbeing.
If you are a parent of a child that has been diagnosed with a special or complex need, what steps can you take to advocate for their rights?
Knowing The Law
The Family and Medical Leave Act (FMLA) allows you to take 12 weeks off within a 12-month period to take care of a child with a serious health condition.
A child with cerebral palsy is covered by the FMLA, so know that you can count on this act to care for your child, using this time to advocate for their needs, do required research, seek new treatment options, and the like.
Know, however, that the FMLA gives employers different ways to count the 12-month period. They can use the calendar year if they wish, but they don’t have to.
Instead, they can use any fixed 12-month period that begins on the same date every year.
If you have a baby that has been diagnosed with a condition that could potentially have been caused by medical negligence (such as cerebral palsy), then investing in a specialist lawyer can also help you obtain compensation that will come in handy for optional and innovative treatments which are not covered by your health insurance.
Joining Key Networks
Being part of a community that includes other parents of children with your child’s condition/s is an invaluable way to glean key information on everything from innovative treatments to the best schools and health professionals.
You can meet parents at support groups, online, or by visiting local parks, aquariums, and other children’s facilities that have dedicated visiting hours for children with special needs.
Finally, social media has a wealth of groups whose members are both family members and caregivers or health professionals willing to provide advice and recommendations, or simply listen to you when you wish to share the challenges you are encountering.
Building A Relationship With Teaching Staff
It is important to see your child’s school and teachers as allies and to ensure that communication is constant and open.
Children with disabilities are entitled to the same education as others under The Individuals with Disabilities Education Act.
However, if they qualify for it, they are also entitled to a written plan that stipulates goals for your child.
Children under the age of three may be eligible for an Individualized Family Service Plan, while those aged three to 21 may be placed on an Individualized Educational Plan.
These plans are reviewed every year, with a major review taking place every three years.
If you are unhappy with your child’s plan, attend IEP planning meetings and request vital changes. In cases where schools are uncooperative, a mediator can help resolve issues so that a lawsuit can be avoided.
If your child has been diagnosed with a special need, advocacy begins with knowing your child’s legal rights.
Uunder the FMLA, you are entitled to 12 weeks per 12-month period to care for your child if eligible.
The steps to take include seeking compensation if it is due, joining parent networks, building a good relationship with your child’s school, and playing an active role in the drafting of their educational plan.