You didn't plan to have a child with a disability, but now that you've received the news, it's time to spring to action. Children with disabilities need more care than non-disabled children. In some cases, having a disabled child changes the entire shape of your life.
Navigating emotions when your child has a disability
It's normal to feel grief, anger, and guilt when discovering your child's disability. Don't beat yourself up for your response. Learning your child has a disability is a shock for most parents, and intense emotions are expected. However, it's important to let go of guilt and instead focus on being there for your child. If you need help working through your feelings, talk to a therapist and join a parent's group for support and advice as you start this unplanned journey.
New parents imagine what life will be like with their baby. Having a child with a disability turns many of those expectations on their head. Caring for a child with a disability requires making changes, sometimes drastic ones, to daily life.
Assess your living situation
Is your home suited to your child's needs? If your child will need mobility aids to get around, consider modifying your home or moving to an accessible house now to enable your child as he grows.
What about your neighborhood?
It might not be an issue during infancy, but eventually you'll want to be in a neighborhood with accessible infrastructure and schools with strong special education programs. For children with high medical needs, proximity to healthcare providers is also important. If you need to move to accommodate your child's disability, research and compare neighborhoods to find one where you'll feel supported and welcome.
Assess your work arrangements
Two working parents might not be an option when your child has a disability. If one parent needs to stay home to provide care, start planning how you'll get by on a single income. When choosing which parent stays home, factor both salary and benefits. A great health insurance plan is an invaluable asset for families with disabilities.
Accessing resources and support
Caring for a child with a disability is often expensive. A disability may mean increased healthcare costs, home and vehicle modifications, paid care providers, and other specialized services. Parents with disabilities can access financial support to help afford these costs.
Government assistance for children with disabilities
Children with disabilities are entitled to certain government benefits.
Supplemental Security Income (SSI) is available for children who meet income and disability criteria. The Social Security Administration has a SSI Child Disability Starter Kit to explain the application process.
Most children who qualify for SSI also receive Medicaid, which can be paired with private health insurance to maximize coverage. (However, Medicaid rules vary by state so it's important to do your research.) If your income is too high for Medicaid, you may be eligible for the Children's Health Insurance Program (CHIP).
Other financial considerations
Every parent should have life insurance, but it's especially important when your child has a disability. Both working and stay-at-home parents should purchase life insurance to cover the cost of their labor in the event of their death. However, you shouldn't name your child as the beneficiary of your policy. Putting assets in your child's name threatens their eligibility for SSI and Medicaid. Be aware of how you can manage the medical system to avoid unwanted and unexpected costs that can drain you of your funds.
Instead, parents can open special needs trusts and name the trust as beneficiary. Parents can fund a special needs trust without risking government benefits because a child doesn't have direct access to assets held by a trust. Instead, the special needs trust is managed by a trustee who administers funds. Another way to save money for your child's care is with an ABLE account. With medical debt being one of the most common reasons that families file for bankruptcy, there are resources available to help guide parents.
No blog post can teach you everything you need to know about raising a child with a disability. Only time and experience will turn you into an expert on your child's care. However, by taking care of these matters now, you lay the groundwork for a safe, supportive home for your special needs child.
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LearningDisabilities.info was created to offer information and understanding to parents of children with learning disabilities, as well as adults who are in need of continued support to succeed.