What to Expect When Expecting a Child with Disabilities

Becoming a new parent is scary, but when you know your child has a mental or physical disability, it can be even more overwhelming. Make the transition a little easier by planning now for your future with these simple tips.

A mother tending to her child

Preparing Your Home

Begin with traditional baby-proofing tasks, focusing on such things as gates on windows and covering electrical outlets with plug covers. That's something that can be done well in advance and spare you a lot of stress later. Here are 20 tips for baby-proofing your home from the experts at Parenting Magazine.

Next, you'll need to consider your child's unique needs. Speak with your doctor and do your research to prepare you for certain challenges your child may face. You may have to make some updates to your home to make it more accessible and safe for your child. If your child will eventually need a wheelchair, you may want to start renovations sooner rather than later to give yourself ample time. To start, one consideration to include is making sure that doorways are wide enough. Your bathroom may also require an overhaul. Read Leah's story at Muscular Dystrophy News of how her family renovated their bathroom to accommodate her needs.

Before you start any work at home, take these first steps:

  • Discuss with your pediatrician or specialist what your child's needs will be as she grows.
  • Plan for your renovations, including budgeting.
  • Find a contractor who understands or has experience with renovating for accessibility.

Buying a New Home

If your current home is not suitable for your child's needs, and you can't make improvements, you may need to consider purchasing a new home. For example, kitchen counters and cabinets may be too tall to access for wheelchair users, and full kitchen renovations are costly. Or perhaps you want to explore a location closer to a medical institution where your child will be receiving regular treatments. If you've decided to buy a new home, start by searching online for accessible homes in your area and work with a knowledgeable realtor who understands your unique needs.

Expenses, Insurance, and Planning for the Future

In addition to needing a good insurance plan, your child will likely be eligible for Medicaid. Still, you might not be completely covered for items your child requires. Learn some strategies you can use to get coverage in this post from Care.com.

According to this article from the Special Needs Alliance, your child may be eligible for more programs, including the Supplemental Security Income (SSI), the Supplemental Nutrition Assistance Program (SNAP), Social Security Disability Insurance (SSDI), and Section 8 Housing. Do your research now, and don't hesitate to reach out to local organizations that can help you navigate the available options.

Your child will likely need long-term funding for her future. USA Today writes about two options worth exploring:

  1. Special Needs Trust: You can set up a special needs trust that allows your child to keep assets in place without losing benefits she will get from the government. This article from U.S. News explains how to set one up.
  2. ABLE Account: You can also set up an ABLE account, which lets you save up to $100,000 without losing benefits. It also has tax advantages.

Consider meeting with a financial planner to discuss long-term funding solutions for your child – and the sooner the better so you can maximize your investments to the fullest.

Finding Qualified and Trustworthy Child Care

Last but certainly not least, you should begin to look for babysitters or nannies who have experience caring for children with special needs. This will involve writing a job description that accurately details what qualities a babysitter must possess, as well as conducting interviews with potential candidates to see if they are trustworthy and have the skills necessary for the job. It's important to ensure you feel this individual can provide the care and compassion your child needs.

Another very important topic is your own life insurance plan and naming a guardian should anything happen to your and your spouse. This is important because, according to Protective.com, if you name your child as the beneficiary on your life insurance, she may no longer be eligible for Medicaid. Use a special needs trust instead, and name a trustee as the beneficiary on your child's behalf. If traditional life insurance is out of reach due to your own health issues or age, burial insurance may be a good alternative. Like traditional life insurance, the funds from burial insurance can be assigned to any beneficiary and can be used for anything. However, because the policies offer less coverage, they are typically easier and less expensive. Consult with a lawyer to determine what would be best for your unique situation. Many law offices will offer a free initial consultation for you to gather information and determine fit.

Self-Care for Parents

Finally become a new parent is a stressful time for anyone. Your child needs you at your best, particularly if they have demanding health issues. It's important not to neglect yourself while tending to your child's needs. Here are some tips for you:

  • Your physical health is important. Be sure to eat three square meals a day, avoiding junk food and sugar as much as possible.
  • Keep yourself hydrated
  • Take a walk to get moving when you can.
  • Find a support group in your area for your child's disability. There's nothing better than finding companionship in other parents who are going through the same thing.
  • Sleep or nap as much as you can. Your schedule may be off, but it will likely get better as your child grows.

Raising a child with a disability is a challenge, but it can be a joyful experience too. Plan for your needs so you can enjoy your time with your child.

About the Author

Tanya Lee created AbilityVillage after watching her younger brother Charlie overcome obstacles associated with cerebral palsy. She wants to make the world a more accessible place for everyone.

Most of the stories here on Live Quickie were submitted by readers. Do you have a story to tell? We'd love to hear it. Submit your story here.

Date: 8/25/2020 12:00:00 AM

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