Five Ways of Being Prepared and Informed: The Challenges of Parenting a Child Diagnosed With a Disability
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By: Emily Graham, Mighty Moms
As an expectant parent, you’re prepared to cope with the expense and physical demands of caring for a child. Planning for what you’ll need to do is part of being a mom or dad, and anticipating the ups and downs is, frankly, part of what makes the experience so memorable and exciting. However, it’s a somewhat different story for parents who find out their child will be born with a developmental or physical disability.
It’s frightening at first, and you may feel alone and isolated, not knowing where to turn for support. But you can rest assured that you are not alone — many people have gone through what you’re experiencing and have raised healthy, happy kids. There’s an abundance of resources, from support groups and individual counseling to detailed classes and instructional materials, to guide you through the early stages of parenting a child diagnosed with a disability.
It’s important to know to what extent your healthcare insurance will cover the expenses involved in caring for a child diagnosed with a disability. This is especially true for families who need to make frequent use of pediatric care and physical therapy. Some policies will allow adult children to stay with their parents’ plan. So, meet with your provider and make sure you understand the details involved, what’s different about insuring a child diagnosed with a disability, and what benefits are available through the government (Medicare, Social Security, etc.), and what’s involved in continuing the coverage as your child grows older.
2) Preparing Your Home
It’s likely that your home may need some modifications. Some people seek out a house specially constructed for accessibility, while others make modifications themselves. For example, if your child requires a wheelchair, it means you’ll need ramp access if there are stairs leading to your home’s entryway. Smooth transitions from room to room will also be necessary, which can be achieved with small transition ramps. For wheelchair access, hallways should be at least 36 inches wide, and 32 inches for doorways. If you’re not in a position to pay a contractor to widen all the doorways in your home, consider installing expandable hinges or installing pocket doors.
3) A New Home
If you decide the right move is to look for a new home, one better suited to the proper care for your child, you’ll need to do plenty of research. Find out about local schools and whether there are any special education opportunities nearby and what those might be. Are there accessible recreational and educational facilities nearby? The more you can cater to your child’s needs, the easier it’ll be to provide responsive and sensitive care.
4) Bathroom Accessibility
Bathroom access is an important aspect of a properly modified home. A level, roll-in shower is a fairly simple modification, as is the installation of safety grab rails in the shower and alongside the toilet. Sliding cabinet and closet doors in bedrooms, bathrooms, and the kitchen will enhance accessibility considerably. Consider replacing plush carpeting with rubber, skid-resistant flooring. As your child gets older, it may become necessary to move his bedroom to the first floor so they do not have to navigate stairs and can be independent.
5) Other Expenses
Parenting a child diagnosed with a disability means you’ll be faced with expenses for ongoing care as well as day-to-day living. Additional costs may come from prescription medications, mobility-assistive devices (wheelchair, walker, cane, etc.), various therapies-physical, speech, occupational, and behavioral, caregivers, special education supports (see IDEA), and the possibility of medical needs. Have a solid understanding of what you can expect from health insurance and establish a special savings fund for ongoing care and medical expenses. Medicaid can make it easier to cover the cost of care, and SSI provides physical assistance under certain circumstances.
It’s essential to be prepared for the needs of a child diagnosed with a disability and to be armed with as much information as possible concerning care and how to cover expenses. Make sure you’re well-informed concerning health insurance benefits and government programs.