Getting Started After a New Diagnosis
Parents often feel overwhelmed when they first hear their child has special health care needs. There are so many questions and knowing where to begin is confusing. The Special Needs Resource Directory can help by connecting you to the information and support you need at each stage along the way.
Tips | Frequent Questions
Here are some first steps to take to help you feel more in control:
- Organize your information so it is easy to share with family, health care providers and teachers. Download or obtain a Parent Notebook and organize important medical records from hospitals, pediatricians and specialists in one place. Use the All About Me Form to communicate your child's likes and dislikes as well as suggestions to put your child at ease. Find these resources and other useful medical forms to help you organize and inform in the Tools and Forms section.
- Consider early on if you have adequate financial resources to cover medical expenses. The Health Insurance and Financial Assistance sections will link you to programs to help pay for the specialized care and equipment your child needs. You may qualify for a Medicaid waiver to help with expenses. The Assistive Technology and Home Care / Durable Medical Equipment sections provide additional funding options. The Estate and Future Planning section will let you know how to protect your child's eligibility for government assistance programs through a Special Needs Trust. Professionals can use the Social Assessment and Discharge Planning forms to help families obtain the resources they will need.
- Learn about your child’s diagnosis. The more you understand, the more confident you will feel in seeking the supports you need from your health care providers, family and community. The Disability-Specific section will link you to local and national web sites that provide an explanation of the condition and suggested resources. You should also ask your doctors and other health providers for additional web sites and resources that they recommend.
- Read about educational programs and supports for your child, from birth through adulthood. The Early Intervention section will let you know about special programs for children, ages 0 through 3 years old. The Education section can tell you about the school system's responsibility to provide educational supports from preschool through adulthood, ages 3 through 21 years old. Students with disabilities have several options to continue their education in postsecondary schools and programs, including vocational schools, job training programs, transition programs, colleges and universities. Read more about these resources in the College and Postsecondary Options and Transition Planning sections.
- Connect with other parents and caregivers. It is very empowering to share your questions, frustrations, tears and celebrations with those facing similar challenges. Realize that you are not alone, and that it often does take a village to raise a child. The Support Groups and the Family Networking and Support sections are good places to begin.
- Find opportunities to have recreational time for you and your child. The Recreation and Camps section can connect you with day and overnight camps, after school activities, sports, accessible playgrounds and toys developed for special needs. The Transportation and Travel area has suggestions for planning a family vacation.
- Take care of yourself. Give yourself permission to be pampered and have time to do the things you enjoy. The Day Care and Respite and Caregiver Resources sections can help you find resources.
Remember to check the Kentucky and Indiana sections to find additional specific state programs that may be available.
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The Special Needs Resource Directory has information and web site links that can help answer some of your questions:
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If your questions are not fully answered by our Special Needs Resource Directory and its links, please contact us via email.
Rev. 10/09
