Whenever you discovered that your child fell into one of the special needs areas, your love didn’t change, but your dreams had to be altered. That realization is like being hit by a truck.
But there was another collision coming. A financial one.
In 2014, the U.S. Department of Agriculture estimated the cost of raising a child from birth to 18 years at $240,000 or about $13,333 a year. The Centers for Disease Control and Prevention said that it costs $17,000 more per year – about $30,000 — to raise a child with autism. Depending on how severe the child’s birth defect or disorder, the cost of lifetime care can run well past $1 million, with occupational, behavioral and life skills therapy, private schooling and private caregivers among the expenses.
Take a deep breath. Help is out there. There are many benefits for parents of a disabled child available for special needs children through sources like the Social Security Administration, Medicaid, insurance, grants and educational assistance.
Will these sources cover all costs? No. But they can make a big difference.
Supplemental Security Income for Special Needs
Supplemental Security Income (SSI), a type of social security benefit, is the only source of federal income reserved for disabled children. SSI for a special needs child can be a lifeline that keeps the family out of poverty.
Not every child qualifies, and SSI is geared toward disadvantaged families, so there are income limits applied to the child and the family he or she lives with. Children on SSI received an average of $647 per month; the maximum payment for an individual is $771 per month. In most states, a child who qualifies for SSI will automatically qualify for Medicaid as well.
Receiving SSI requires proving the child suffers “marked and severe functional limitations’’ that must be established by medical evidence. Examples include Down syndrome, cerebral palsy, autism, intellectual disability and blindness. The maximum monthly amount of earned income a family can make for a disabled child to qualify for SSI is $3,209 for a one-parent family, $3,981 for a two-parent household assuming there are no other children in the home. (The amounts increase if there are other children.) If all income is unearned, the monthly limits are $1,582 and $1,968, respectively.
Government programs and private insurance are primary ways to help offset the cost of treating children with special health care needs. In 2016, Medicaid and the Children’s Health Insurance Program (CHIP) covered almost half of children with special health care needs. As with SSI, Medicaid and CHIP, which is run by states under federal rules, have financial eligibility limits, but they extend well above the poverty line. In January 2017, the median financial eligibility level for Medicaid and CHIP children was 255% ($52,989 per year for a family of three).
Medicaid covers many medical and long-term care services for special needs children, many of which are covered in limited amounts – if at all – in private insurance. In addition to doctor visits, hospitalizations, x-rays, lab tests and prescription drugs, it covers behavioral health, dental, hearing and vision care, physical, occupational and speech therapy and medical equipment and supplies. Medicaid also covers long-term care services, such as private duty nursing, that help children with special health care needs remain at home with their families, and non-emergency medical transportation to appointments.
Private insurance, on the other hand, often does not cover long-term care services and may offer limited coverage of other services important to children with special health care needs such as dental care, mental health services or physical, occupational, or speech therapy. By 2014, all but two states required insurance companies to cover autism spectrum disorders, but some coverage mandates are minimal. Visits to specialists often require the referral of the child’s pediatrician, which increases expense and inconvenience. It pays to learn what your insurance does and doesn’t cover, and you should be willing to challenge insurance companies when they deny payments or services.
Tax Credits for Special Needs Families
Tax breaks provide another important way to lessen the financial impact of caring for children with special medical needs. It begins with deducting unreimbursed medical expenses when filing your federal income taxes. You can deduct the amount that exceeds 7.5% of your adjusted gross income. If your adjusted gross income is $50,000, the threshold is $3,750. So, if you had $10,000 in medical expenses, you could deduct $6,250. The deductible expenses include more than just medicines and doctor bills: Medically required foods, mileage to and from health care visits and therapy supplies count, too.
The child and dependent care credit is a tax break for paying someone to care for your child while working or looking for work. There is no age limit if the child is disabled. Better news: It’s a credit rather than a deduction, so it cuts your tax bill directly instead of just reducing your taxable income. The credit can be up to $3,000 per dependent, to a maximum of $6,000 for all dependents. Child-care, after-school programs and day camp qualify for the credit. Keep good records and consult your accountant.
Another break is a 529A account, which are state-sponsored accounts that allow disabled people to save significant amounts without threatening their eligibility for need-based government help. Disabled people, their families and friends can contribute as much as $14,000 a year without putting federal benefits at risk. These are not deductible on federal taxes but are at the state level in some states. The permissible size of the account also varies by state.
Special Needs Grants
It may sound too good to be true, but there really are grants available to help people whose children have special needs. The need criteria and income requirements vary greatly, the funds are not limitless and a lot of people may be seeking the grants at the same time you are.
Grants for parents with special needs children
- Autism Cares Today SOS Program – Supports those impacted with autism who have an immediate need for treatment or support and whose safety is jeopardized if treatment is not found.
- Parker’s Purpose Foundation Assistance – Provides financial assistance up to $1,000 to any family who has a minor with a life-altering illness or disability that is in an immediate financial crisis due to unforeseen medical expenses. Funding preference is given to Ohio residents, but is granted outside the state of Ohio if deemed eligible.
- First Hand Foundation – Provides funding for items to improve the quality of life of individuals with disabilities not otherwise covered by insurance.
- Ben’s Fund – Provides grants up to $1,000 to families across Washington state who need financial assistance related to their child’s autism spectrum disorder treatments.
- Autism Support Network – has an extensive list of grants available for autism related expenses.
A significant amount of financial aid is directed specifically toward students with special needs and learning disabilities. Here are several, ordered by disability.
Attention Deficit Disorder
Rise Scholarship Foundation – Five students diagnosed with ADD or ADHD and an additional learning disability receive this $2,500 award annually. Applicants must have a grade point average of 2.5 or higher to qualify.
Organization for Autism Research – Two nonrenewable, $3,000 scholarships for students on the autism spectrum who are full-time students working toward certification or accreditation in a particular field.
Learning and Cognitive Disabilities
Anne Ford Scholarship – The $10,000 scholarship ($2,500 per year over four years) goes to a graduating high school senior who will attend a four-year bachelor’s degree program. Recipients must demonstrate financial need and be involved in school and community activities.
Landmark College Scholarships – Landmark College is one of only two colleges in the country specifically for students with learning disabilities. Multiple scholarships ranging from $5,000 to $34,000 are available for students and are based on financial aid and merit.
Lighthouse Guild – Up to 10 merit-based scholarships are awarded each year to legally blind high school students getting ready to attend college.
Microsoft DisAbility Scholarship – Awarded to promising high school students with financial need who plan to attend a vocational or academic college. This scholarship provides $5,000 per year up to a total of $20,000 and is designed for students who seek a career in the technology industry.
Financial Assistance for Disabled Adults
Obviously, programs designed to assist children are limited to younger age groups. Fortunately, there are programs that provide financial assistance for the disabled, who live in poverty at much higher percentages than the general population. Only 37.3 percent of disabled adults are employed in the United States, according to disabilitystatistics.org at Cornell University.
The first place to look is the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs.
To qualify for SSDI, you must have held jobs that were covered by Social Security and have a disability that meets Social Security’s requirements. Those approved will receive monthly cash benefits. Those denied can file a disability appeal and potentially still be awarded benefits. SSI is funded by tax revenue rather than Social Security and is designed for disabled people who don’t have sufficient income.
The Social Security Administration’s Benefit Eligibility Screening Tool is where to find out if you qualify.
The federal Temporary Assistance for Needy Families provides funds to states and territories to provide families with financial assistance and related support services to meet people’s basic needs. State-administered programs may include childcare assistance, job preparation, and work assistance. To find out what your state offers, visit https://www.acf.hhs.gov/ofa/help.
The U.S. Department of Housing and Urban Development offers housing vouchers to non-elderly disabled families to help qualifying families pay their rent. The Supplemental Nutrition Assistance Program (SNAP) offers assistance to low-income families by giving benefits for food. You can use SNAP benefits at grocery stores to make sure that you have food on the table. Those in these programs may also qualify for the Low-Income Home Energy Assistance Program, a service that provides money to pay utilities.
So, while a child having special medical needs brings years of financial challenges, you don’t have to do this alone. Take advantage of these programs, and be on the lookout for others.