Parenting any child can be a challenge. Parenting a child who has physical, developmental or emotional disabilities can multiply these demands tenfold. Among the challenges faced by the parent of a special needs child are paying the bills, care-giving on a daily basis, and advocating for your child’s access to available services, including healthcare and education. Here is some of the assistance available to children and youth with special health care needs (CYSHCN).
Many state and federal government programs provide financial and other forms of assistance to parents who are raising children with disabilities. Your child may qualify for Supplemental Security Income (SSI) benefits if your household income is low and your child is considered to have a developmental disability or physical disability. If eligible, your child may receive monthly checks until age 18.
SSI payments can provide much-needed funds to help alleviate your financial burden and provide your child with things that you otherwise couldn't afford, but you must spend the monthly SSI payment on food, housing (including utilities), clothing, medical care, or personal needs for your child. If there is money left over, it can be spent on entertainment such as movies, special camps, sports, or music lessons.
After age 18, people with special needs may qualify for Social Security Disability Insurance or Disabled Adult Child benefits through Social Security. If young adults need guardians to manage their financial and personal affairs, they will be assigned representative payees (often their parents) to receive their government benefits.
When it comes to necessary medical care, the costs can be astronomical if you don’t have private health care insurance. Your child may be eligible for coverage through the Children's Health Insurance Program (CHIP) or Medicaid (in many states, it automatically comes with SSI), which can significantly reduce your out-of-pocket medical costs or sometimes eliminate them entirely. Call 800-318-2596 to find out if you're eligible for CHIP, contact your local social services agency about Medicaid, or visit the Family Voices website to locate help in your area.
The federal government requires all public schools through high school to provide children who suffer from disabilities with a free appropriate education and special services to help them succeed in their courses. Such services revolve around an IEP, or Individualized Education Program, which is mandated by the Individuals with Disabilities Education Act (IDEA). If your child is struggling in school due to a disability, you have the right to have your child evaluated and to seek appropriate services; you can take legal action if these services are denied or inadequate.
Many nonprofit organizations provide valuable resources to parents of children with special educational needs and/or disabilities. Among these services are day camps and recreational centers that focus on the needs of children who suffer from similar disabilities. Taking advantage of these services can give you a much-needed break. If your child needs special equipment like a wheelchair or other medical devices, you may be able to find an organization that will give you these things for free. Start by finding a national or local organization that supports children who have the type of special needs that your child has. A great resource is Ability List, a place where people in your community can share national and local resources for children with disabilities.
