One Step at a Time

Learning that your child has a disability can bring a wave of emotions—fear, grief, anger, guilt, confusion, denial, and so many more. Some parents are shocked. Others are relieved when a diagnosis gives a name to their concerns. Amid all of the emotion, there is one underlying question: What do we do now?

A young boy smiles at the camera
A young girl stands on a playground with one hand in the air and a ball in the other hand
A young boy looks through a tamborine

After the Diagnosis

Every family, every individual, and every diagnosis is unique; therefore, there is no single right answer to the question of what comes next after a diagnosis. We can help you find the right answer for your situation.

Educate Yourself

  • Focus on your child. Learn about your child’s diagnosis in general terms, but also take note of your child’s unique abilities, interests, and challenges. Every individual is different, with or without disabilities, and every individual has a variety of strengths and weaknesses.
  • Ask questions—as many as you need to, as often as you need to. When meeting with health care providers and others, try to prepare a list of questions in advance so that you don’t forget something. Take notes or ask permission to record the answers. There will be a lot of information to take in, and no one can remember everything.
  • Create a system for organizing information related to your child: birth certificate, Social Security card, medical records, test results, financial paperwork, school records, meeting records, etc. Find a method that works for you so that you can easily find what you need. You’ll want something portable that you can take to appointments and meetings.
  • Seek evaluations from various professionals with expertise in your child’s needs. These may include:
    • Therapists (speech/language, occupational, physical)
    • Behavior consultants
    • Alternative therapy practitioners
    • Medical specialists (neurologists, gastroenterologists, developmental pediatricians, geneticists, psychiatrists)
    • Social skills training groups
    • Dietitians
  • Learn about special education programs and laws.
    • Visit https://www.in.gov/doe for information from the Indiana Department of Education.
    • Look for workshops and other training through organizations such as Easterseals Arc, The Arc of Indiana, IN*SOURCE, and ASK (About Special Kids).

Seek Support

  • Apply for in-home and community support services through the Medicaid waiver program.
    • Developmental disabilities: There are two waivers, Family Supports (FS) Waiver and the Community Integration and Habilitation (CIH) Waiver, for individuals with developmental disabilities. The FS Waiver is the basic entry point for waiver services, while the CIH Waiver has more specific needs-based eligibility criteria. To apply for the FS waiver, contact the Bureau of Developmental Disabilities Services (BDDS) at 260.423.2571. There is a waiting list, so get information and apply early.
    • Skilled nursing care/medical needs: Individuals requiring nursing facility level of care (including children) may be eligible for the Aged & Disabled Waiver or the Traumatic Brain Injury (TBI) Waiver. To apply for these waivers, contact Aging and In-Home Services of Northeast Indiana at 260.745.1200 or info@agingihs.org.
  • Contact First Steps or your public school special education department.
    • First Steps serves families with children from birth to 3 years old who are experiencing developmental delays or have a diagnosed condition that has a high probability of resulting in a developmental delay. The program offers evaluations, direct services and therapies, and service coordinators to help identify and bring together resources. Call 260.444.2994 or visit www.indianafirststeps.org.
    • If your child is older than 3, contact your school district’s early childhood special education services program.
  • Apply for medical benefits based upon need. Indiana Children’s Special Health Care Services (CSHCS) provides supplemental medical coverage to help families of children who have serious, chronic medical conditions who meet the program’s financial and medical criteria. Call 800.475.1355 or email cshcscarecoordinatio@isdh.in.gov.
  • Apply for Supplemental Security Income, which is administered by the Social Security Administration. Call 877.223.6061or visit www.ssa.gov/ssi for information.
  • Contact the Safe at Home registry to alert first responders that an individual with disabilities lives in your home. This knowledge can be helpful to firefighters, EMTs, and police when responding to an emergency. Call 260.469.3036 for information.

Care for Yourself

Parents of children with disabilities need to remember to take care of themselves also. Here are two programs to consider:

  • Caregiver Support Services: If your family does not have Medicaid waiver services yet, you may qualify for Caregiver Support Services. This program provides temporary relief for the primary caregiver. Contact the Bureau of Developmental Disabilities Services (BDDS) at 260.423.2571.
  • Parents Taking Action: Parents Taking Action is a peer-mentoring program offered by Easterseals Arc. Trained parents of children with disabilities help participating families learn about available services, strategies for improving behaviors, and how to advocate for their children. Contact Easterseals Arc at 260.456.4534 for more information.

Connect With Others

  • Find a support group to meet others facing similar joys and challenges. There are many different groups in the Fort Wayne area for individuals with disabilities as well as for families and caregivers.
  • Find social and recreation activities for your loved one. Fun activities are a great way to build a natural support system of friends while developing social and communication skills. Easterseals has an extensive recreation program, and many activities in the community cater to individuals with disabilities.

Connect with Us

We look forward to helping you create a support plan with the services that meet your unique needs.

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