Choosing a name, decorating the nursery, childproofing your home: these are important and exciting steps to take before having a baby, but if you're expecting a child with special needs, it's hardly all that's on your mind. In addition to the standard baby prep tasks, you have to learn how to meet your child’s needs so you're prepared from the day you bring your baby home. While every child with a mental or physical disability is different, these are some things you should think about as you prepare to grow your family.
Preparing Your Finances
Caring for a child with extensive health care needs puts financial strain on families. Depending on your child's disability, birth may be followed by a stay in the neonatal intensive care unit, or NICU, procedures to correct birth defects, and/or therapies to develop your child's abilities and quality of life. In an interview with Kiplinger, one family with special needs children reports they budget to spend the out-of-pocket maximum on their health insurance policy each year. Because out-of-pocket expenses vary across policies, you should review your coverage and find a policy that minimizes your financial burden.
Know that insurers may refuse to pay for experimental treatments. Budget as much as possible for health care needs so you can afford the best treatments for your child, even when health insurance falls short.
Your child may be eligible for Medicaid/CHIP, whether through income or disability-related pathways such as the Katie Beckett pathway and the Family Opportunity Act pathway. You can learn more about Medicaid for children with disabilities at the Kaiser Family Foundation. Low-income families can also receive financial support through Supplemental Security Income (SSI).
Preparing Your Home
An accessible living environment is central to your child's quality of life. When a home is designed to your child's needs, your child enjoys increased independence. An accessible home also makes daily life easier for parents and caregivers.
While your child may not need accessibility features until he or she is older, it's smart to pursue accessible housing now. Depending on your child's needs, daily care may take up a lot of your time and energy, leaving little for house hunting and remodeling. If you handle housing before your child is born, that's one less thing on your plate.
Talk to your doctor about the physical challenges your child is expected to have. The nature of your child's disability may dictate a need for a wheelchair-accessible home, increased lighting to compensate for vision impairments, or safety features designed for the deaf and hard-of-hearing. You may also want a home where your child's bedroom is next to your own.
Since remodeling is expensive and time consuming, it may be simpler to purchase an accessible home rather than renovate your current home. In Philadelphia, the average listing price for an accessible home is $225,000. Because this is similar to the price of a non-accessible home, shopping for accessible housing is a cost-effective option.
Caring for a newborn is challenging under the best of circumstances. When you're having a baby with special needs, your financial, physical, and emotional capacity can be stretched to its limits. If you're going to give your child the care he or she deserves, you need to take care of yourself too.
A mental health professional is an invaluable resource for working through difficult emotions in a safe, nonjudgmental space. Also consider joining a support group for parents of children with special needs. Raising an infant with disabilities can be an isolating experience; support groups remind you that you're not alone.
Link up with an early intervention program for help understanding and meeting your child's needs. The Center for Parent Information and Resources explains how early intervention helps children and toddlers with disabilities.
Find a capable childcare provider or caregiver who can look after your child when you need a break. Hiring house-cleaning services, dog walkers, and other in-home help is another way to lighten your load.
Preparing for a child with disabilities can be overwhelming. However, the more you can accomplish before your child arrives, the more prepared you'll be for the day-to-day reality of caring for your new baby. And remember, you're not alone: From support groups to state services, there are resources available to help you navigate your family's future.
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