What to Do If Your Child Receives a Diagnosis.
Developed by Jackie Yearby and Emily DeWoody for the Interagency Council of Brevard
Family & Medical Support
You get the feeling that something isn’t right? Go with your gut, find a doctor or specialist and get a diagnosis, and assemble your medical team. Find a support group to understand and deal with the diagnosis.
This can be a scary time but stay positive and know that you’re not alone. Don’t be afraid to ask lots of questions, or to seek a second opinion if you’re not sure. Be ready to accept the diagnosis that you’re given. Acceptance does not mean giving up, it just allows you to become the best advocate that you can be. Start collecting your documentation…this is a life-long process. You will need documentation to gain access to services, applying for APD, legal purposes (guardianship), etc.
Find a support group to learn about the diagnosis. Building friendships with common interests is important for both parents and children.
Find community resources. Become familiar with local organizations and agencies that provide services to individuals with disabilities. Develop extra-curricular activities that can be maintained throughout the individual’s life such as bowling, dance, robotics, horse-back riding, or Special Olympics.
In order to receive services you may need to get an intellectual evaluation, in addition to whatever medical diagnosis was provided. Contact Early Steps if your child is under 3 years of age.
Contact FDRLS (Florida diagnostic and Learning Resources System) if your child is between 3 and 5 years old. Contact your school guidance counselor if your child is older. You also have the option of seeking a private provider for an evaluation.
Apply for the Med-Waiver Wait List through the Agency for Persons with Disabilities (APD at apdcares.org) if your child has one of the following disabilities: Autism, Cerebral Palsy, Prader-Willi Syndrome, Spina Bifida, Down Syndrome, intellectual disability. For eligibility details visit www.bit.ly/APDeligibility.
Research school options, including traditional education versus alternative schools or home schooling. If your child is in school, and not yet receiving services, contact your guidance counselor to begin the evaluation and eligibility process. If your child is found eligible for educational services, develop a 504 or IEP (Individual Education Plan).
Be your child’s advocate. Put together documentation that explains his or her special needs. Create an “about me” page with your child’s strengths and difficulties to share with teachers and therapists.
It can be overwhelming and scary but take each challenge one step at a time. Connecting with local support and other parents can be a tremendous help.
Will your child get a standard or special diploma? The decision will be made on or before students’ 14th birthday. If on a special diploma, the student can stay in school up until their 22nd birthday.
1. Start identifying your child’s strengths and weaknesses and work on behavior and communication skills. Plan ahead to help your child lead a meaningful, productive life.
2. Get involved. Know what your child is working on in school. The “whole community” (parents, therapists, teachers) should be communicating and working together.
3. Keep in mind that the IEP is KEY to the future of your child’s successful transition.
4. Three years before entering college the individual will need a full re-evaluation.
Transition – Moving from School to Adult Life
The IEP starts your transition planning at age 14. The IEP starts your transition planning at age 14. (Reference ICB Transition Brochure) www.bit.ly/ICBguide
Will I go to college? Traditional college versus special diploma options versus Vocational School. (College Internship Program / Project Sting Ray/ Eastern State College/ Project BLAST)
Employment & Housing
Where will I work? What will I do? Where will I live? (Space Coast Center for Independent Living – www.sccil.net)
Put together an Estate Plan which should consist of: Carrying Life Insurance, Setting Up a Trust, Writing a Will and Appointing a Guardian, Writing a Care Plan, Funeral Pre-planning, and Coordinating with Other Family Members.
First Steps: A Guide for Parents of
Young Children with Developmental Disabilities – www.fddc.org/publications/first-steps
Transition Planning for Students with Disabilities (Project 10) – www.bit.ly/tranguide