Become Your Own Expert. As a parent, you are your baby’s best advocate. Trust your medical professionals but arm yourself with everything you can learn. Rely on information from reputable organizations such as the American Academy of Pediatrics and Easter Seals. The Arc is a national organization serving people with intellectual and developmental disabilities and their families. As you navigate medical and other appointments, ask questions for understanding and clarification. The more you know, the stronger your confidence in speaking up when you need to for your child.
Identify a Trusted Team. You have a choice when it comes to the physician and specialists you work with. Consider your initial appointments to be interviews. How are they with your child? How much time do they give you? Do they thoroughly review your treatment options? And, perhaps most importantly, do they listen to you? In addition to medical and occupational specialists, you may also want to consider adding a special needs attorney to your team as early as possible to help address the complexities relating to public benefits eligibility.
Explore Services and Resources. Your baby may be eligible for programs at the state and federal level. For example, each state has Early Intervention Services, a comprehensive suite of medical, therapeutic, and social services. These services, established under the Individuals with Disabilities Education Act (IDEA), are designed for children with disabilities from birth to age 3, sometimes longer. Children with some disabilities, including Down syndrome and cerebral palsy, will automatically qualify. Others may need to be evaluated with the parents’ permission. In addition to early invention, your county or state may have other programs available to you. Hospital social workers often have this information and are a great resource. Visit this page for New Hampshire’s area agencies.
Find Support. We can’t overstate the value of being able to talk to other parents who have walked a similar path. They can be a tremendous source of encouragement, wisdom, and answers. Parent to Parent USA matches you to experienced support parents who can provide practical and emotional support. In New Hampshire, you may want to check out the comprehensive list of groups on New Hampshire Family Voices.
Start Thinking of the Long Term. Setting up a Special Needs Trust may not be the first thing on your mind, but you should not wait to develop a plan for what will happen with your child upon your death. Setting up a Special Needs Trust may be essential to ensuring your child will qualify for valuable means-tested benefits such as Medicaid and Supplemental Security Income (SSI) on your death. You’ll also want to update your Will and make sure you appoint a suitable guardian to care for your child should you not be able to. There are many factors to consider when balancing your child’s current and future needs against benefits and care requirements. Consulting with an experienced special needs attorney is a good place to start.